Original post 2/15/08
In September of 1985, my mother, who was 49, was diagnosed with breast cancer. Although advances had been made in the treatment of breast cancer, it was still, for most patients, a death sentence.
She had a mastectomy & the lymph nodes under her arm removed. When the pathology showed that the cancer had spread to the lymph nodes I was not optimistic.
Within 6 weeks, she was scheduled for a complete hysterectomy, which I was told was related to the breast cancer, but I did not fully understand how. I did not know what questions to ask.
My mother made me and my 2 sisters promise that we would have yearly mammograms when we reached age 40. (I’ve kept my promise.) My mother never had yearly mammograms. She was always afraid of doctors & afraid of bad news. She avoided both like the plague. In fact, my dad later told me that she knew for a year that she had a lump in her breast but refused to go to the doctor to have it checked, because she was afraid it was malignant. I thought that was the dumbest reason for not having it checked. This is the very reason I vowed to keep my promise to have yearly mammograms & to never ignore a lump if I detected one.
My mother began chemotherapy, but she did not finish the set number of treatments because they made her so sick.
In December of 1988, she visited the oncologist for a checkup & a complaint of a pain in her chest. A bone scan revealed that her cancer had metastasized to her ribs. She underwent radiation treatments. The cancer continued to spread. She underwent chemotherapy. The cancer continued to spread. She fought the battle with cancer until November 28, 1990.
My mother’s faith in God gave her strength. Although she fought the battle with strength and courage, she also went through times of deep depression. My dad and those of us who supported and prayed for her did what we could to help and to encourage her during those times, as we lifted her up in our prayers & helped her in any way we could. Sometimes, her anger, over the disease robbing her of life, was misdirected. In hindsight, we recognize this. At that time, it was hard to understand where it was coming from. Why was she mad at the whole world? Isn’t it funny how hindsight helps us to see things from a different perspective?
It’s not an easy road to travel for the one who has cancer or for the family members. It takes a lot of patience, understanding, willingness to forgive human weaknesses, and a willingness to be emotionally and physically supportive of each other. Apart from faith in God, maintaining a relationship with God and healthy relationships with each other that include open communication, I don’t know how this can happen. A network of supportive friends is also a huge advantage. If these relationships are not strong before such a diagnosis, they are nearly impossible to build in the midst of dealing with the multitude of things that bombard you upon learning that you have such a disease. My heart aches for those who travel the road alone!
How I praise God for my salvation, my relationship with God, my husband, Ed, and the wonderful relationships I share with Ed & my kids, kids-in-law and grandson: Steven, Kelly & Parker; Lisa & Dave; & Kristy! The networks of supportive friends at Penn College & Christ Wesleyan Church are also wonderful blessings. I am so richly blessed!
Tuesday, July 20, 2010
Ch 2 – A Sore Shoulder – What Does It Mean?
Original post 2/25/08
July 2007, friends invited us to join them for a week’s vacation in the Berkshires. We had a wonderful time, but I was bothered by a sore left shoulder, especially at night. I could not lie on it, & of course I prefer to sleep on my left side. I couldn’t think of anything I had done to cause this type of pain. It even hurt when I moved it to change clothes. What a mystery. One morning while showering, I decided to poke around to see if I could find the source of the pain I was experiencing. To my surprise, I discovered a small lump deep in my arm pit. How weird is that? A small lump in my arm pit was making my shoulder sore. Was it some mild infection that would clear up in a few days? I told Ed what I discovered, & we decided I would call my doctor to ask about it if the pain & the lump did not go away by the following week. The pain went away, & I totally forgot about it.
In mid-September the shoulder pain returned. I checked my left arm pit & realized that the lump was now a superficial bump. I did not have to probe to find it. I went to the bathroom, stood in front of the mirror, raised my left arm, with my body at a slight twist to the left & could see a slight, round bulge that was about an inch in diameter. Now what? Call the doctor! I told Ed the lump I felt in July had not gone away but had actually grown & was again causing pain. He too was quite concerned!
Dr. Pam says it might be one of several minor ailments or, worst case scenario, lymphoma. She orders a battery of blood tests. I can’t even remember how many tubes of blood are drawn; I just remember there are a lot! From a physical exam, every lymph node she can feel, from my neck to my pelvis, seems to be somewhat enlarged; so, she orders a chest x-ray. The x-ray shows that the lymph nodes in the center of my chest are also somewhat enlarged. She says that she always proceeds from the most pessimistic possibility in hopes that she is proven to be wrong. The next step is to schedule a CT scan to look at the lymph nodes under my arms, in my chest & pelvis more closely. By the time the results of the scan & blood work are known enough time will elapse to know if the precautionary antibiotic makes any difference. If we don’t get answers from these sources & the lymph node is still enlarged, she will then send me to a surgeon to have it biopsied.
The possible prognosis of lymphoma does not really sink in until after I leave the office. When it does, it hits me like a ton of bricks! If I had any idea this is the type of news I was going to hear I would not have gone by myself. I call my husband & tell him what the possibilities are. I don’t want him to think I am falling apart; I try to be very positive & to downplay the possibility of lymphoma. We call our children to let them know what is going on, so they will be aware of the situation & so they will pray for us. Of course, they are stunned by the possibility of lymphoma.
As Ed & I wait, for weeks, for results, we cling to each other; we do a lot of talking, a lot of embracing, a lot of praying together. We spend as much time together as possible. Our priorities quickly shift. When I am by myself I try to go about my responsibilities, but my thoughts are distracted & keep drifting from prioritizing my day & my week, to planning what I want to do when my health is good enough to allow me to do special projects that I want to do for Ed & each of the kids before I die, to planning my funeral. I know it’s morbid, but I’m being honest. My mind is convinced that I'll be gone inside of a year. Why? I don't know. It's probably because of my preconceived notions about cancer. The "C" word evokes unpleasant memories of friends & loved ones as they struggled through the final stages of the disease; we watch & wonder if their suffering is due to the treatment, the disease or the combination of the 2. It’s sad & heartbreaking!! I don’t want to think of myself as the person going through such an ordeal. I’ve prayed, for years, that God would protect me from having cancer. I was sure I was safe. Even my prayers now include asking God for enough time to complete my special projects I want to leave behind, as symbols of my love, for my family. I want to live to travel with my husband when he retires; I want to see my grandson go to school, graduate from high school & college & get married; I want the same for my granddaughter, who is due April 2008. You think about these things when you are faced with the possibility of having a life-threatening illness. It sharpens your awareness of many things.
I research lymphoma on the Internet. When I discover there are 2 families of lymphoma, I make a deal with God. I ask Him, “If I do have lymphoma, can I have one from this family that has a longer life expectancy?” What am I doing? If I have lymphoma, the type is already decided; there is no changing it (Psalm 139: 16). I ask some friends to keep me in their prayers & also called our church prayer chain to have my name added.
I tell friends what I may be facing. They tell me they know I am a strong person & I will get through it like I did when I was in the auto accident. Don’t they understand? In 1999, I was in a near fatal car accident. All that I’ve regained & accomplished has only been possible because of God’s grace. Yes, I worked very hard, but I could not have done it unless God made it possible. It was not my strength they saw; it was the strength I drew from God (I have strength for all things in Christ who empowers me – I am ready for anything & equal to anything through Him who infuses inner strength into me, [that is, I am self-sufficient in Christ’s sufficiency]. (Amplified Bible Philippians 4:13).
During the fall of 2007, I taught two math courses at Penn College, in Williamsport. I remember many times walking into class wondering how I am going to pull myself together to teach this class. My hands are shaking & my knees were wobbly. I breathe a prayer as I set up the classroom; then I open my mouth & begin the lesson. Each time God helped me push the distracting thoughts aside long enough to complete the lesson.
As you can see, I was struggling with anxiety as we worked through the process of eliminating possibilities, while handling my regular responsibilities. Due to a brain injury, from an auto accident in 1999, the number of stimuli my brain can handle at one time is very limited. Even crowded stores or very busy highways are often too much for my brain. I avoid them at all costs. There are times that I begin to visibly shake & cannot stop for 15 minutes to half an hour. With one medication I am able to control some of the daytime anxiety; with another, I am able to sleep at night. I remember a time when I would have been too proud to take such medications; or, if I did, I would not admit it to anyone. Today, I realize that I sometimes need such help so that I am to function & to think rationally.
Contemporary Christian music also soothes my soul, & I listen to it as often as possible. The melody of the music calms me psychologically, & the lyrics remind me of Scripture & God’s promises. Prayer is also very effective in reducing the frequency & severity of the anxiety so that I take fewer anxiety pills as we progress through the process. With the proper combination of these three, my quality of life is much improved!
Results of the blood work come back first. Nothing is abnormal.
The 10 days of the antibiotic elapse. No change in the lymph node.
The results of the CT scan come back. The lymph nodes in the mediastinum are somewhat enlarged, & there are 2 small nodules on the lungs, but all are under 1 centimeter. The recommendation is to have them rechecked in 6 months.
It is now November. Although the pain is gone, the lymph node is still enlarged. Off to the surgeon for a biopsy. Despite the fact that I have a superficial swelling, the surgeon has a difficult time finding the actual “lump,” because it is so deep against my chest wall. Based on the information he is given, he says, in his opinion, there is less than a 10% chance that the lymph node is malignant. Based on the other test results & the fact that I understand cancerous tumors generally do not cause pain, I am now reasonably sure he is correct.
July 2007, friends invited us to join them for a week’s vacation in the Berkshires. We had a wonderful time, but I was bothered by a sore left shoulder, especially at night. I could not lie on it, & of course I prefer to sleep on my left side. I couldn’t think of anything I had done to cause this type of pain. It even hurt when I moved it to change clothes. What a mystery. One morning while showering, I decided to poke around to see if I could find the source of the pain I was experiencing. To my surprise, I discovered a small lump deep in my arm pit. How weird is that? A small lump in my arm pit was making my shoulder sore. Was it some mild infection that would clear up in a few days? I told Ed what I discovered, & we decided I would call my doctor to ask about it if the pain & the lump did not go away by the following week. The pain went away, & I totally forgot about it.
In mid-September the shoulder pain returned. I checked my left arm pit & realized that the lump was now a superficial bump. I did not have to probe to find it. I went to the bathroom, stood in front of the mirror, raised my left arm, with my body at a slight twist to the left & could see a slight, round bulge that was about an inch in diameter. Now what? Call the doctor! I told Ed the lump I felt in July had not gone away but had actually grown & was again causing pain. He too was quite concerned!
Dr. Pam says it might be one of several minor ailments or, worst case scenario, lymphoma. She orders a battery of blood tests. I can’t even remember how many tubes of blood are drawn; I just remember there are a lot! From a physical exam, every lymph node she can feel, from my neck to my pelvis, seems to be somewhat enlarged; so, she orders a chest x-ray. The x-ray shows that the lymph nodes in the center of my chest are also somewhat enlarged. She says that she always proceeds from the most pessimistic possibility in hopes that she is proven to be wrong. The next step is to schedule a CT scan to look at the lymph nodes under my arms, in my chest & pelvis more closely. By the time the results of the scan & blood work are known enough time will elapse to know if the precautionary antibiotic makes any difference. If we don’t get answers from these sources & the lymph node is still enlarged, she will then send me to a surgeon to have it biopsied.
The possible prognosis of lymphoma does not really sink in until after I leave the office. When it does, it hits me like a ton of bricks! If I had any idea this is the type of news I was going to hear I would not have gone by myself. I call my husband & tell him what the possibilities are. I don’t want him to think I am falling apart; I try to be very positive & to downplay the possibility of lymphoma. We call our children to let them know what is going on, so they will be aware of the situation & so they will pray for us. Of course, they are stunned by the possibility of lymphoma.
As Ed & I wait, for weeks, for results, we cling to each other; we do a lot of talking, a lot of embracing, a lot of praying together. We spend as much time together as possible. Our priorities quickly shift. When I am by myself I try to go about my responsibilities, but my thoughts are distracted & keep drifting from prioritizing my day & my week, to planning what I want to do when my health is good enough to allow me to do special projects that I want to do for Ed & each of the kids before I die, to planning my funeral. I know it’s morbid, but I’m being honest. My mind is convinced that I'll be gone inside of a year. Why? I don't know. It's probably because of my preconceived notions about cancer. The "C" word evokes unpleasant memories of friends & loved ones as they struggled through the final stages of the disease; we watch & wonder if their suffering is due to the treatment, the disease or the combination of the 2. It’s sad & heartbreaking!! I don’t want to think of myself as the person going through such an ordeal. I’ve prayed, for years, that God would protect me from having cancer. I was sure I was safe. Even my prayers now include asking God for enough time to complete my special projects I want to leave behind, as symbols of my love, for my family. I want to live to travel with my husband when he retires; I want to see my grandson go to school, graduate from high school & college & get married; I want the same for my granddaughter, who is due April 2008. You think about these things when you are faced with the possibility of having a life-threatening illness. It sharpens your awareness of many things.
I research lymphoma on the Internet. When I discover there are 2 families of lymphoma, I make a deal with God. I ask Him, “If I do have lymphoma, can I have one from this family that has a longer life expectancy?” What am I doing? If I have lymphoma, the type is already decided; there is no changing it (Psalm 139: 16). I ask some friends to keep me in their prayers & also called our church prayer chain to have my name added.
I tell friends what I may be facing. They tell me they know I am a strong person & I will get through it like I did when I was in the auto accident. Don’t they understand? In 1999, I was in a near fatal car accident. All that I’ve regained & accomplished has only been possible because of God’s grace. Yes, I worked very hard, but I could not have done it unless God made it possible. It was not my strength they saw; it was the strength I drew from God (I have strength for all things in Christ who empowers me – I am ready for anything & equal to anything through Him who infuses inner strength into me, [that is, I am self-sufficient in Christ’s sufficiency]. (Amplified Bible Philippians 4:13).
During the fall of 2007, I taught two math courses at Penn College, in Williamsport. I remember many times walking into class wondering how I am going to pull myself together to teach this class. My hands are shaking & my knees were wobbly. I breathe a prayer as I set up the classroom; then I open my mouth & begin the lesson. Each time God helped me push the distracting thoughts aside long enough to complete the lesson.
As you can see, I was struggling with anxiety as we worked through the process of eliminating possibilities, while handling my regular responsibilities. Due to a brain injury, from an auto accident in 1999, the number of stimuli my brain can handle at one time is very limited. Even crowded stores or very busy highways are often too much for my brain. I avoid them at all costs. There are times that I begin to visibly shake & cannot stop for 15 minutes to half an hour. With one medication I am able to control some of the daytime anxiety; with another, I am able to sleep at night. I remember a time when I would have been too proud to take such medications; or, if I did, I would not admit it to anyone. Today, I realize that I sometimes need such help so that I am to function & to think rationally.
Contemporary Christian music also soothes my soul, & I listen to it as often as possible. The melody of the music calms me psychologically, & the lyrics remind me of Scripture & God’s promises. Prayer is also very effective in reducing the frequency & severity of the anxiety so that I take fewer anxiety pills as we progress through the process. With the proper combination of these three, my quality of life is much improved!
Results of the blood work come back first. Nothing is abnormal.
The 10 days of the antibiotic elapse. No change in the lymph node.
The results of the CT scan come back. The lymph nodes in the mediastinum are somewhat enlarged, & there are 2 small nodules on the lungs, but all are under 1 centimeter. The recommendation is to have them rechecked in 6 months.
It is now November. Although the pain is gone, the lymph node is still enlarged. Off to the surgeon for a biopsy. Despite the fact that I have a superficial swelling, the surgeon has a difficult time finding the actual “lump,” because it is so deep against my chest wall. Based on the information he is given, he says, in his opinion, there is less than a 10% chance that the lymph node is malignant. Based on the other test results & the fact that I understand cancerous tumors generally do not cause pain, I am now reasonably sure he is correct.
Ch 3 – Diagnosis – Peace That Transcends Understanding
Original post 3/7/08
I spent two months of struggling with anxiety over the possibility of having a life-threatening disease. It was understandable that this possibility caused Ed to re-live his worst nightmare – almost losing me in an auto accident, in 1999. He received a phone call from the hospital chaplain to inform him that I was being treated in the emergency room at Geisinger Hospital. The closest he came to finding out my condition was the response to his question, “Should I contact the family?” When she said, “Yes,” he knew how serious my condition was. When he was finally permitted to see me, after several long hours, I was still in an unresponsive state, & he could only recognize me by my wedding rings.
My life-threatening injuries were quite severe & very extensive. Although it was 4 days before the doctors determined that I was going to live, God assured Ed, as he prayed for me in the hospital prayer chapel, as I was undergoing surgery the night of the accident, that I was going to make it. Even when the doctors determined that I would make it, they were not sure that I would ever walk again, if my short-term memory would return, or if I would ever be able to carry on a conversation in full sentences. As you can see, I’ve done all of that & more. Praise God!
In light of overcoming so much when the odds were against me, everyone around me thought I was the one who was so strong to get through it all. Even Ed saw it that way, in many respects. However, you must know that I only know about most of this as secondhand information. I am as amazed as anyone at what God did for me! I wasn’t aware of it when my life was in danger. I only have very short snippets of memories (positive ones, of specific visitors & specific events) from the first 3 weeks in the hospital. I don’t remember not having my short-term memory. I never heard, or don’t remember hearing, the doctors say that I probably wouldn’t be able to carry on conversations in full sentences or that I probably wouldn’t be able to walk again. I only ever assumed that I would recover back to “normal” again. Sometimes ignorance is bliss & a blessing!
Although Ed & the kids are facing, for a 2nd time, the possibility of losing me, I am facing my mortality for the 1st time. I am not afraid to die; I know where I am going when I do. As I explained earlier, there are a lot of things that I want to see & do yet, before I leave this earth. As I was recovering from my auto accident, I ask God why He spared my life, & He told me because He is not finished with me yet. I found myself pleadingly asking, “You did say you aren’t finished with me yet, didn’t you, God?” I feel that it is vitally important that I fulfill my God-given purpose in life.
After my auto accident my faith & prayers were more open, simple & childlike. Prayers were more often conversations, two-way conversations. And they continue to be two-way conversations at critical points in time. God says a lot in a few words; sometimes He points me to a verse or portion of Scripture. If He does not speak Scripture, I look to confirm what I hear with Scripture.
As I said in chapter 2, I discovered ways to find relief from the anxiety I was experiencing, but I really needed to find was peace deep in my soul. God gave me that “peace that transcends understanding” – the kind referred to in Philippians 4:4–7 – the Friday morning I went to get the results of the lymph node biopsy.
Ed has to go to the college before we got to the appointment. When he comes home, I am singing along with a praise & worship CD as I am getting ready. He was quite surprised to find me calm & singing! I tell him that the music helps me to keep my focus on the fact that God is in control. The results are what they are; I can’t change them. I explain what happened as I was getting ready: As I brush my teeth, I sense God telling me that the biopsy is malignant. I gulp hard, but before I can form my next thought, He adds, “but it’s not a death sentence.” Each time my mind tries to form another negative “but . . . God” thought, He repeats, “it’s not a death sentence.” After about 3 times I get the message & thank Him! WOW! A sense of peace washes over me that I cannot describe.
We meet the surgeon. The look on his face, the hesitation in his voice & the difficulty in making eye contact is enough to let us know what he is about to tell us. The lymph node is a little over 2 centimeters & it is malignant. However, the pathologist assured the surgeon that it is not lymphoma. Because it is not lymphoma, it came from somewhere else. Instead she says it is either breast or lung cancer that has spread to this lymph node & perhaps others. What? I’ve never had an irregular mammogram & the CT scan, in September, did not seem to indicate anything of consequence.
I am prepared for the diagnosis of malignancy, but it still shakes me. The doctor gives us some time alone to cry together. The surgeon has already ordered the films from my last mammogram, 11 months earlier. I am sent for a digital mammogram & told to return after lunch to discuss the results.
The digital mammogram shows 3 calcium deposits, which can be harmless & very natural. An ultrasound of that area is done. Then another mammogram of the area of the calcifications is done to zoom in, to enlarge that smaller area. I have no detectable lumps, no discernable shadows around the calcifications, nothing suspicious except the malignant lymph node. The surgeon says there is a 50/50 chance the calcifications are malignant. He recommends that I have a biopsy of the calcifications, which I do early the next week. You already guessed the outcome. The 2 centimeter biopsy is malignant, & they do not get clean margins – meaning they do not get all of the cancer.
Over the weekend, we do a lot of talking & praying. I tell Ed about my experience as I brushed my teeth before we went to the appointment. Because the experience is mine, I can share the story but cannot give him my sense of peace. However, I am still on the lookout for Scriptural confirmation.
As a part of the sermon Sunday morning Pastor Arlie shows a video testimony. The woman uses Psalm 18:19 as her anchor verse. I turn to it in my Bible. (I always have a marker in Psalm 18 as it is my anchor chapter in my testimony with regard to my accident in 1999. Read the following for some insight: Psalm 18:1-6, 16-19, 30-36.) I back up to verse 16 and read through verse 19. As I do, I noticed that I have a cross-reference written above verse 19. I turn to Psalm 91:14–16. I notice that I have underlined each time it states “I will” in the entire chapter. God is not wishy-washy He is definite! We can depend on Him; He keeps his Word! When I get to verse 16 the words “with long life” could have leapt off of the page! I hand my Bible to Ed & have him read the 2 passages, hoping they will have the same meaning for him as they do for me. These 2 passages, in Psalm 18 and Psalm 91, are the Scriptural confirmation that my diagnosis with cancer is not a death sentence. God is not done with me yet!
The challenge now is to rely on God moment-by-moment so that I do not allow anyone or anything to steal my peace as I face the uncertainties that lie ahead.
I spent two months of struggling with anxiety over the possibility of having a life-threatening disease. It was understandable that this possibility caused Ed to re-live his worst nightmare – almost losing me in an auto accident, in 1999. He received a phone call from the hospital chaplain to inform him that I was being treated in the emergency room at Geisinger Hospital. The closest he came to finding out my condition was the response to his question, “Should I contact the family?” When she said, “Yes,” he knew how serious my condition was. When he was finally permitted to see me, after several long hours, I was still in an unresponsive state, & he could only recognize me by my wedding rings.
My life-threatening injuries were quite severe & very extensive. Although it was 4 days before the doctors determined that I was going to live, God assured Ed, as he prayed for me in the hospital prayer chapel, as I was undergoing surgery the night of the accident, that I was going to make it. Even when the doctors determined that I would make it, they were not sure that I would ever walk again, if my short-term memory would return, or if I would ever be able to carry on a conversation in full sentences. As you can see, I’ve done all of that & more. Praise God!
In light of overcoming so much when the odds were against me, everyone around me thought I was the one who was so strong to get through it all. Even Ed saw it that way, in many respects. However, you must know that I only know about most of this as secondhand information. I am as amazed as anyone at what God did for me! I wasn’t aware of it when my life was in danger. I only have very short snippets of memories (positive ones, of specific visitors & specific events) from the first 3 weeks in the hospital. I don’t remember not having my short-term memory. I never heard, or don’t remember hearing, the doctors say that I probably wouldn’t be able to carry on conversations in full sentences or that I probably wouldn’t be able to walk again. I only ever assumed that I would recover back to “normal” again. Sometimes ignorance is bliss & a blessing!
Although Ed & the kids are facing, for a 2nd time, the possibility of losing me, I am facing my mortality for the 1st time. I am not afraid to die; I know where I am going when I do. As I explained earlier, there are a lot of things that I want to see & do yet, before I leave this earth. As I was recovering from my auto accident, I ask God why He spared my life, & He told me because He is not finished with me yet. I found myself pleadingly asking, “You did say you aren’t finished with me yet, didn’t you, God?” I feel that it is vitally important that I fulfill my God-given purpose in life.
After my auto accident my faith & prayers were more open, simple & childlike. Prayers were more often conversations, two-way conversations. And they continue to be two-way conversations at critical points in time. God says a lot in a few words; sometimes He points me to a verse or portion of Scripture. If He does not speak Scripture, I look to confirm what I hear with Scripture.
As I said in chapter 2, I discovered ways to find relief from the anxiety I was experiencing, but I really needed to find was peace deep in my soul. God gave me that “peace that transcends understanding” – the kind referred to in Philippians 4:4–7 – the Friday morning I went to get the results of the lymph node biopsy.
Ed has to go to the college before we got to the appointment. When he comes home, I am singing along with a praise & worship CD as I am getting ready. He was quite surprised to find me calm & singing! I tell him that the music helps me to keep my focus on the fact that God is in control. The results are what they are; I can’t change them. I explain what happened as I was getting ready: As I brush my teeth, I sense God telling me that the biopsy is malignant. I gulp hard, but before I can form my next thought, He adds, “but it’s not a death sentence.” Each time my mind tries to form another negative “but . . . God” thought, He repeats, “it’s not a death sentence.” After about 3 times I get the message & thank Him! WOW! A sense of peace washes over me that I cannot describe.
We meet the surgeon. The look on his face, the hesitation in his voice & the difficulty in making eye contact is enough to let us know what he is about to tell us. The lymph node is a little over 2 centimeters & it is malignant. However, the pathologist assured the surgeon that it is not lymphoma. Because it is not lymphoma, it came from somewhere else. Instead she says it is either breast or lung cancer that has spread to this lymph node & perhaps others. What? I’ve never had an irregular mammogram & the CT scan, in September, did not seem to indicate anything of consequence.
I am prepared for the diagnosis of malignancy, but it still shakes me. The doctor gives us some time alone to cry together. The surgeon has already ordered the films from my last mammogram, 11 months earlier. I am sent for a digital mammogram & told to return after lunch to discuss the results.
The digital mammogram shows 3 calcium deposits, which can be harmless & very natural. An ultrasound of that area is done. Then another mammogram of the area of the calcifications is done to zoom in, to enlarge that smaller area. I have no detectable lumps, no discernable shadows around the calcifications, nothing suspicious except the malignant lymph node. The surgeon says there is a 50/50 chance the calcifications are malignant. He recommends that I have a biopsy of the calcifications, which I do early the next week. You already guessed the outcome. The 2 centimeter biopsy is malignant, & they do not get clean margins – meaning they do not get all of the cancer.
Over the weekend, we do a lot of talking & praying. I tell Ed about my experience as I brushed my teeth before we went to the appointment. Because the experience is mine, I can share the story but cannot give him my sense of peace. However, I am still on the lookout for Scriptural confirmation.
As a part of the sermon Sunday morning Pastor Arlie shows a video testimony. The woman uses Psalm 18:19 as her anchor verse. I turn to it in my Bible. (I always have a marker in Psalm 18 as it is my anchor chapter in my testimony with regard to my accident in 1999. Read the following for some insight: Psalm 18:1-6, 16-19, 30-36.) I back up to verse 16 and read through verse 19. As I do, I noticed that I have a cross-reference written above verse 19. I turn to Psalm 91:14–16. I notice that I have underlined each time it states “I will” in the entire chapter. God is not wishy-washy He is definite! We can depend on Him; He keeps his Word! When I get to verse 16 the words “with long life” could have leapt off of the page! I hand my Bible to Ed & have him read the 2 passages, hoping they will have the same meaning for him as they do for me. These 2 passages, in Psalm 18 and Psalm 91, are the Scriptural confirmation that my diagnosis with cancer is not a death sentence. God is not done with me yet!
The challenge now is to rely on God moment-by-moment so that I do not allow anyone or anything to steal my peace as I face the uncertainties that lie ahead.
Ch 4 – Blessings of Family
Original post 3/26/08
The days between the Friday appointment, when we learned that the lymph node biopsy is malignant & the impending breast biopsy, Wed. Nov. 21, ‘07, are exhausting, as we recount the events of the Friday appointment to family & friends. I call the prayer line at our church, Christ Wesleyan, to request prayer & to inform them of my preliminary diagnosis. In the evening, Ed calls my brother Andy, my sister Jennifer, & his parents; he calls our 3 kids Steven, Lisa & Kristy. Everyone is surprised, somewhat shaken, concerned & has questions we cannot answer. The phone calls are emotionally exhausting for Ed, but I just can’t make the calls. I do talk to Andy, Jennifer & the kids briefly, after Ed shares the initial news, to assure them that I am OK.
God’s reassurance, before the appointment, that the diagnosis is not a death sentence is a great comfort to me, but I am not able to convey that same sense of peace to Ed. I can only pray that God will give Ed his own personal experience that will allow him to sense God’s peace. I could understand that if the tables were turned I would feel as he does. While I would believe him, I would still think, “I wish God would give me that same peace, and I hope he is right about this not being a death sentence.”
The kids all want to come home, but that is not possible for all of them. Steven, Kelly & Parker spend Saturday with us. It is therapeutic to enjoy spending quality family time together. Parker, an active two-and-a-half-year-old, who is oblivious to the situation, has a wonderful way of diverting one’s mind from a troubling situation.
Kelly is in the final phase of her course work & clinical training as a hospital laboratory technologist. She offers to answer questions, pose questions, define clinical terms, interpret lab reports & ask her supervisor for input on lab reports as needed. Her expertise & resources come in quite handy through out this journey!
Sunday morning, in church, I submit a prayer request slip to a greeter & mark that it can be shared publicly. At intercessory prayer time, Pastor Arlie shares that I have just been diagnosed with cancer & am undergoing a second biopsy in the coming week to determine the type & to hopefully determine the stage of the cancer.
The video testimony, which I described in the chapter 3 blog, occurred prior to this time; so, as I explained, I was reassured that my cancer was not a death sentence. The uncertainty, OK, I’ll tell the truth, the fear (not paralyzing fear, but fear, nonetheless) for me was the part in between the diagnosis & recovery. I have witnessed enough people going through chemo & radiation to know that it seems as though the doctors take them to the brink of death, in the process of killing the cancer, even when the person survives. It’s not a pleasant thought. Do I have breast or lung cancer? I don’t know how I can have either, given my test results.
I go to the front of the church at intercessory prayer time & sit on a prayer bench. My sister, Jennifer, sits beside me & Ed kneels in front of me. Jennifer & I lock forearms & clasp hands tightly, until we both have white knuckles. I have my other arm around Ed’s neck. It is probably more of a headlock than a hug, since I am hanging on so tightly. Pastor Arlie prays for me. I can’t remember exactly what he said, but I remember that he gave thanks to God for the many miracles He’s done on my behalf after my accident, in 1999, and he made mention of the miracles that astounded the doctors, because I recovered beyond what they ever thought possible. He also mentioned how God continued His work in my life as He helped me to attain a college degree, with honors, despite a brain injury. In saying these things, he’s suggesting that God’s plan for my life is not complete & asking God to again perform a miracle & heal me of this cancer.
When he finishes the prayer he moves to the next person, & my husband hands me some tissues. With tears still streaming down my face, I glance up to see a very large number of people surrounding us to pray with us. It is so humbling & overwhelming that I spent the remainder of the prayer time praying for those people. I thank God for their love, care & concern & asking God to meet the needs of their lives. It makes me ask, “Who am I that this many people would do this for me?” When prayer time ends, many of them hug me & tell me that they will be praying for me daily. I know they mean it & will do it!
Kristy calls me Sunday afternoon to tell me not to worry about Thanksgiving dinner. When I ask why, she says she will cook the meal for the family, if I will buy the food. Of course, I am pleasantly surprised by her loving offer! Although I still love to have the family together for holiday meals, it has become quite an interesting ordeal for me to plan & orchestrate, due to my brain injury. Given the current circumstances, Kristy is very intuitive to foresee the added stress I will be under to pull off a holiday meal successfully. Ed says he will order pies for dessert & help me do the shopping. Kristy says she will be home Wednesday night to begin preparations. Thanksgiving Day she apologizes for asking for my help, as she prepares the meal, when the meal was done, but I am glad to help. I tell her that fixing a holiday meal for 8 people is never a one-person show; I never do it all by myself.
Monday, we return to work. Of course our co-workers know of our appointment Friday. The barrage of questions all day long shows the extent of care & concern by our co-workers. This is very much appreciated, but it is emotionally draining to retell the story repeatedly, especially for Ed. We have a network of friends who are genuinely concerned & willing to help out in any way possible. It is actually easier for me to answer questions than it is for Ed, because God has given me such peace. I’m not shy about sharing the fact that God has told me this isn’t a death sentence. My goal is to be honest about why I am not a nervous wreck, & to let them know that it is not an act. I am honest about the fact that I am apprehensive about treatment, but certain that I will get through it. I’m sure several people thought I was a little strange, but they are willing to go along with it if it makes me feel OK with the diagnosis.
All the love, care & support we receive from our family, our church family & our network of friends at the college is a great comfort & a wonderful blessing in our lives! We have commented numerous times that we can literally feel the prayers sustaining us & holding us up at times when circumstances are pushing us down & closing in on us. Praise God!
Since we believe in praying for specifics & that there is more power when more people are believing & asking God for the same thing(s), we try to let people who are praying for us know our specific needs & prayer concerns. When God answers our specific prayers, we let these same people know that God has met our need or answered our concerns. A long time ago I ask myself, “If I don’t pray specific prayers, how will I ever know if God answers my prayers?”
Friday, after the biopsy, we call to ask for the results & learn that it is malignant. I have breast cancer. Soon after that call, the Center for Breast Health calls me, & asks me to stop by to pick up a packet of materials on breast cancer that Ed & I should read prior to our appointment with the surgeon Friday after Thanksgiving. We are told that we are welcome to bring any of our children & that we should write down any questions we have. The nurse highlighted information that pertains to the specific type of cancer I have (ductal, invasive ductal carcinoma) & the other important information for us to read.
We learn a lot about cancer. It is so overwhelming to read, because it is now personal. Because I am an avid reader, it is quite unusual that I read only what I have to read. Ed & Lisa also read through the info. Lisa becomes so intrigued by the info. that she conducts an Internet search of some topics. She & Ed make a list of questions for the appointment. Ed, Lisa & her husband, Dave, & I go to the appointment. We continue to learn more about my cancer & breast cancer in general. One of the questions we ask is whether or not the surgeon can tell us the stage of my cancer. He cannot because the breast biopsy is 2 centimeters, but he did not get clean margins, & he does not know if the lymph node removed is the only lymph node that is malignant. We are told that the oncologist will answer that question.
This process that is already, as far as we were concerned, taking too long, is now stretching out further & further! Based on what we learn, in the literature & from the surgeon, about the average rate at which cancer cells double, this is making our family (3 math teachers & a mechanical engineer) VERY uncomfortable! We thought surgery would be scheduled at this appointment, but we are wrong.
I thought my mind was on overload as I contemplated the possibility of having lymphoma, but it seems so mild compared to the deluge of information, literature, advice & stories I am told, when I learn & inform others of my diagnosis. It is MUCH easier with my supportive husband, family, church family, friends, & network of co-workers. Thank you God for loving me & blessing my life with these wonderful people!
The days between the Friday appointment, when we learned that the lymph node biopsy is malignant & the impending breast biopsy, Wed. Nov. 21, ‘07, are exhausting, as we recount the events of the Friday appointment to family & friends. I call the prayer line at our church, Christ Wesleyan, to request prayer & to inform them of my preliminary diagnosis. In the evening, Ed calls my brother Andy, my sister Jennifer, & his parents; he calls our 3 kids Steven, Lisa & Kristy. Everyone is surprised, somewhat shaken, concerned & has questions we cannot answer. The phone calls are emotionally exhausting for Ed, but I just can’t make the calls. I do talk to Andy, Jennifer & the kids briefly, after Ed shares the initial news, to assure them that I am OK.
God’s reassurance, before the appointment, that the diagnosis is not a death sentence is a great comfort to me, but I am not able to convey that same sense of peace to Ed. I can only pray that God will give Ed his own personal experience that will allow him to sense God’s peace. I could understand that if the tables were turned I would feel as he does. While I would believe him, I would still think, “I wish God would give me that same peace, and I hope he is right about this not being a death sentence.”
The kids all want to come home, but that is not possible for all of them. Steven, Kelly & Parker spend Saturday with us. It is therapeutic to enjoy spending quality family time together. Parker, an active two-and-a-half-year-old, who is oblivious to the situation, has a wonderful way of diverting one’s mind from a troubling situation.
Kelly is in the final phase of her course work & clinical training as a hospital laboratory technologist. She offers to answer questions, pose questions, define clinical terms, interpret lab reports & ask her supervisor for input on lab reports as needed. Her expertise & resources come in quite handy through out this journey!
Sunday morning, in church, I submit a prayer request slip to a greeter & mark that it can be shared publicly. At intercessory prayer time, Pastor Arlie shares that I have just been diagnosed with cancer & am undergoing a second biopsy in the coming week to determine the type & to hopefully determine the stage of the cancer.
The video testimony, which I described in the chapter 3 blog, occurred prior to this time; so, as I explained, I was reassured that my cancer was not a death sentence. The uncertainty, OK, I’ll tell the truth, the fear (not paralyzing fear, but fear, nonetheless) for me was the part in between the diagnosis & recovery. I have witnessed enough people going through chemo & radiation to know that it seems as though the doctors take them to the brink of death, in the process of killing the cancer, even when the person survives. It’s not a pleasant thought. Do I have breast or lung cancer? I don’t know how I can have either, given my test results.
I go to the front of the church at intercessory prayer time & sit on a prayer bench. My sister, Jennifer, sits beside me & Ed kneels in front of me. Jennifer & I lock forearms & clasp hands tightly, until we both have white knuckles. I have my other arm around Ed’s neck. It is probably more of a headlock than a hug, since I am hanging on so tightly. Pastor Arlie prays for me. I can’t remember exactly what he said, but I remember that he gave thanks to God for the many miracles He’s done on my behalf after my accident, in 1999, and he made mention of the miracles that astounded the doctors, because I recovered beyond what they ever thought possible. He also mentioned how God continued His work in my life as He helped me to attain a college degree, with honors, despite a brain injury. In saying these things, he’s suggesting that God’s plan for my life is not complete & asking God to again perform a miracle & heal me of this cancer.
When he finishes the prayer he moves to the next person, & my husband hands me some tissues. With tears still streaming down my face, I glance up to see a very large number of people surrounding us to pray with us. It is so humbling & overwhelming that I spent the remainder of the prayer time praying for those people. I thank God for their love, care & concern & asking God to meet the needs of their lives. It makes me ask, “Who am I that this many people would do this for me?” When prayer time ends, many of them hug me & tell me that they will be praying for me daily. I know they mean it & will do it!
Kristy calls me Sunday afternoon to tell me not to worry about Thanksgiving dinner. When I ask why, she says she will cook the meal for the family, if I will buy the food. Of course, I am pleasantly surprised by her loving offer! Although I still love to have the family together for holiday meals, it has become quite an interesting ordeal for me to plan & orchestrate, due to my brain injury. Given the current circumstances, Kristy is very intuitive to foresee the added stress I will be under to pull off a holiday meal successfully. Ed says he will order pies for dessert & help me do the shopping. Kristy says she will be home Wednesday night to begin preparations. Thanksgiving Day she apologizes for asking for my help, as she prepares the meal, when the meal was done, but I am glad to help. I tell her that fixing a holiday meal for 8 people is never a one-person show; I never do it all by myself.
Monday, we return to work. Of course our co-workers know of our appointment Friday. The barrage of questions all day long shows the extent of care & concern by our co-workers. This is very much appreciated, but it is emotionally draining to retell the story repeatedly, especially for Ed. We have a network of friends who are genuinely concerned & willing to help out in any way possible. It is actually easier for me to answer questions than it is for Ed, because God has given me such peace. I’m not shy about sharing the fact that God has told me this isn’t a death sentence. My goal is to be honest about why I am not a nervous wreck, & to let them know that it is not an act. I am honest about the fact that I am apprehensive about treatment, but certain that I will get through it. I’m sure several people thought I was a little strange, but they are willing to go along with it if it makes me feel OK with the diagnosis.
All the love, care & support we receive from our family, our church family & our network of friends at the college is a great comfort & a wonderful blessing in our lives! We have commented numerous times that we can literally feel the prayers sustaining us & holding us up at times when circumstances are pushing us down & closing in on us. Praise God!
Since we believe in praying for specifics & that there is more power when more people are believing & asking God for the same thing(s), we try to let people who are praying for us know our specific needs & prayer concerns. When God answers our specific prayers, we let these same people know that God has met our need or answered our concerns. A long time ago I ask myself, “If I don’t pray specific prayers, how will I ever know if God answers my prayers?”
Friday, after the biopsy, we call to ask for the results & learn that it is malignant. I have breast cancer. Soon after that call, the Center for Breast Health calls me, & asks me to stop by to pick up a packet of materials on breast cancer that Ed & I should read prior to our appointment with the surgeon Friday after Thanksgiving. We are told that we are welcome to bring any of our children & that we should write down any questions we have. The nurse highlighted information that pertains to the specific type of cancer I have (ductal, invasive ductal carcinoma) & the other important information for us to read.
We learn a lot about cancer. It is so overwhelming to read, because it is now personal. Because I am an avid reader, it is quite unusual that I read only what I have to read. Ed & Lisa also read through the info. Lisa becomes so intrigued by the info. that she conducts an Internet search of some topics. She & Ed make a list of questions for the appointment. Ed, Lisa & her husband, Dave, & I go to the appointment. We continue to learn more about my cancer & breast cancer in general. One of the questions we ask is whether or not the surgeon can tell us the stage of my cancer. He cannot because the breast biopsy is 2 centimeters, but he did not get clean margins, & he does not know if the lymph node removed is the only lymph node that is malignant. We are told that the oncologist will answer that question.
This process that is already, as far as we were concerned, taking too long, is now stretching out further & further! Based on what we learn, in the literature & from the surgeon, about the average rate at which cancer cells double, this is making our family (3 math teachers & a mechanical engineer) VERY uncomfortable! We thought surgery would be scheduled at this appointment, but we are wrong.
I thought my mind was on overload as I contemplated the possibility of having lymphoma, but it seems so mild compared to the deluge of information, literature, advice & stories I am told, when I learn & inform others of my diagnosis. It is MUCH easier with my supportive husband, family, church family, friends, & network of co-workers. Thank you God for loving me & blessing my life with these wonderful people!
Ch 5 – Other Difficulties
Original post 4/4/08
The appointment with the surgeon, Nov. 23rd, is about 3 hours long! We learn a lot & ask a lot of questions. The surgeon comments that it is backwards to learn that I have breast cancer by finding a malignant lymph node.
We ask if we can have genetic testing done to determine if my cancer is genetic, since my mother also had breast cancer. The nurse writes a letter & fills out the paperwork to start the process, but we are told that it can take 4-6 weeks to get the results. We are asked if the results will make any difference in the decision I will make about my surgery. Oh no, another fly in the ointment! This is my deciding factor between a single or bilateral mastectomy. From what I have read, my chances of developing cancer in the remaining breast are too high, if my cancer is genetic, & I will opt for a bilateral mastectomy. I silently cry out to God, “OK, God You are in control. You can get these results back to us sooner than 4-6 weeks.” We also want to know these results for our children & my siblings. It will be wonderful if it is not genetic & they can have the peace of mind in knowing that.
In learning that my cancer is estrogen receptor (ER) positive I know I have to call Dr. Pam & stop my hormone replacement therapy (HRT). This will create another health issue to deal with – more frequent & more severe migraine headaches. The very reason I remained on HRT for so long after my hysterectomy, in 1993, is because it helped to decrease the frequency & severity of my post-trauma migraine headaches. I was in an auto accident in 1989 & suffered from whiplash & a blow to the head. The result was 2 ruptured discs in my neck & post-trauma migraines. I only went through 10 doctors before I finally received help from Dr. Pam to help me with the migraines & an orthopedic surgeon who did an MRI & found the 2 ruptured discs in my neck. He removed the worst offender & fused the 2 vertebrae, which gave me relief from 4 years of terrible neck, back, shoulder & arm pain. For the migraines, I had previously been through every family of medicine known to treat them. Some did nothing, others I was allergic to, & some had side effects I could not tolerate. My best approach was to have medication to take when a migraine struck. Dr. Pam explained to me, prior to the hysterectomy, that it could cure my migraines or cause the frequency & severity to increase. Lucky me; I got the latter. The first 3 days home from the hospital, I was back to the E.R. twice for shots to treat the pain for these awful migraines. When we tried HRT, the frequency & severity of the migraines subsided. Therefore, it seemed reasonable to remain on it to keep the migraines under control. As you can see, I’m no stranger to pain or to health issues. I can assure you, they are fertile ground for learning to trust God.
Monday Nov. 26th we are anxiously awaiting a call from Lisa, who is expecting her 1st child. She is to have her 2nd ultra sound, to check all the vital information, as well as, to learn the sex of the baby. I have told her that I am sure it is a girl.
There are no classes at the college Monday, but Ed & I go to the college in the afternoon, because he has some things to do. When his cell phone rings we were so excited, but I see his face go from a smile to grave concern very quickly. He asks a lot of questions to try to get as much information as possible. I am trying to fill in the blanks as I hear Ed’s side of the conversation. As he hangs up, we embrace. I ask what is wrong. He tells me, while choking back tears, that it’s a girl, but the ultra sound indicates she may have a life-threatening birth defect. It hits us like a ton of bricks! Our heads were swirling with questions! We leave for home. Although we had planned on going out for dinner, we don’t have the appetite to do so, at this point. We need to get something to eat; so, we pick up a slice of pizza & fill the car with gas. When Ed gets back in the car, he asks me what I think we should do. I say I think we should go to the prayer chapel; he agrees. We drive directly there. We are so thankful that Christ Wesleyan has a prayer chapel that is open 24/7!
We kneel at the altar side-by-side, hand-in-hand & take turns praying aloud, together. Then we pray silently, alone. Oh, we shed lots of tears & go through lots of tissues. We sit & talk together a while. After that we sit & listen silently for God to speak to us. When we speak to each other again, we both say that we have a sense of peace that our granddaughter is going to be OK. Ed says that God also gave him peace that I am going to be OK, too. Praise God! He is so AWESOME!
When we get home we call Lisa & Dave to tell them about our experience at the prayer chapel & to ask if they want us to call any other family members. We also let them know that we called the prayer line at the church. Lisa says that she has a follow-up appointment at the University of Virginia (UVA) Dec. 6th, for another ultra sound, where they have more sensitive equipment & more highly trained technicians & doctors. We will be going to visit them the weekend of the 7th but will call for the results on the 6th. We will trust God for a positive report.
The appointment with the surgeon, Nov. 23rd, is about 3 hours long! We learn a lot & ask a lot of questions. The surgeon comments that it is backwards to learn that I have breast cancer by finding a malignant lymph node.
We ask if we can have genetic testing done to determine if my cancer is genetic, since my mother also had breast cancer. The nurse writes a letter & fills out the paperwork to start the process, but we are told that it can take 4-6 weeks to get the results. We are asked if the results will make any difference in the decision I will make about my surgery. Oh no, another fly in the ointment! This is my deciding factor between a single or bilateral mastectomy. From what I have read, my chances of developing cancer in the remaining breast are too high, if my cancer is genetic, & I will opt for a bilateral mastectomy. I silently cry out to God, “OK, God You are in control. You can get these results back to us sooner than 4-6 weeks.” We also want to know these results for our children & my siblings. It will be wonderful if it is not genetic & they can have the peace of mind in knowing that.
In learning that my cancer is estrogen receptor (ER) positive I know I have to call Dr. Pam & stop my hormone replacement therapy (HRT). This will create another health issue to deal with – more frequent & more severe migraine headaches. The very reason I remained on HRT for so long after my hysterectomy, in 1993, is because it helped to decrease the frequency & severity of my post-trauma migraine headaches. I was in an auto accident in 1989 & suffered from whiplash & a blow to the head. The result was 2 ruptured discs in my neck & post-trauma migraines. I only went through 10 doctors before I finally received help from Dr. Pam to help me with the migraines & an orthopedic surgeon who did an MRI & found the 2 ruptured discs in my neck. He removed the worst offender & fused the 2 vertebrae, which gave me relief from 4 years of terrible neck, back, shoulder & arm pain. For the migraines, I had previously been through every family of medicine known to treat them. Some did nothing, others I was allergic to, & some had side effects I could not tolerate. My best approach was to have medication to take when a migraine struck. Dr. Pam explained to me, prior to the hysterectomy, that it could cure my migraines or cause the frequency & severity to increase. Lucky me; I got the latter. The first 3 days home from the hospital, I was back to the E.R. twice for shots to treat the pain for these awful migraines. When we tried HRT, the frequency & severity of the migraines subsided. Therefore, it seemed reasonable to remain on it to keep the migraines under control. As you can see, I’m no stranger to pain or to health issues. I can assure you, they are fertile ground for learning to trust God.
Monday Nov. 26th we are anxiously awaiting a call from Lisa, who is expecting her 1st child. She is to have her 2nd ultra sound, to check all the vital information, as well as, to learn the sex of the baby. I have told her that I am sure it is a girl.
There are no classes at the college Monday, but Ed & I go to the college in the afternoon, because he has some things to do. When his cell phone rings we were so excited, but I see his face go from a smile to grave concern very quickly. He asks a lot of questions to try to get as much information as possible. I am trying to fill in the blanks as I hear Ed’s side of the conversation. As he hangs up, we embrace. I ask what is wrong. He tells me, while choking back tears, that it’s a girl, but the ultra sound indicates she may have a life-threatening birth defect. It hits us like a ton of bricks! Our heads were swirling with questions! We leave for home. Although we had planned on going out for dinner, we don’t have the appetite to do so, at this point. We need to get something to eat; so, we pick up a slice of pizza & fill the car with gas. When Ed gets back in the car, he asks me what I think we should do. I say I think we should go to the prayer chapel; he agrees. We drive directly there. We are so thankful that Christ Wesleyan has a prayer chapel that is open 24/7!
We kneel at the altar side-by-side, hand-in-hand & take turns praying aloud, together. Then we pray silently, alone. Oh, we shed lots of tears & go through lots of tissues. We sit & talk together a while. After that we sit & listen silently for God to speak to us. When we speak to each other again, we both say that we have a sense of peace that our granddaughter is going to be OK. Ed says that God also gave him peace that I am going to be OK, too. Praise God! He is so AWESOME!
When we get home we call Lisa & Dave to tell them about our experience at the prayer chapel & to ask if they want us to call any other family members. We also let them know that we called the prayer line at the church. Lisa says that she has a follow-up appointment at the University of Virginia (UVA) Dec. 6th, for another ultra sound, where they have more sensitive equipment & more highly trained technicians & doctors. We will be going to visit them the weekend of the 7th but will call for the results on the 6th. We will trust God for a positive report.
Ch 6 – Angry to SPECTACULAR!
Original post 4/4/08
Dec. 5th, we are scheduled to meet with the medical & radiology oncologists. The night before, Ed reminds me that I have papers to fill out. It’s late when he reminds me, & I’m tired. Filling out papers with my medical history makes me cranky because it’s a reminder of all the recent bad stuff that I’ve gone through. To top it off, I have to fill out 2 sets, & the doctors are in the same office. That makes me crankier. I don’t know why they can’t just make a photo copy of one set. By the time I get through both sets I have them all jumbled up. I don’t know which papers are for which doctor.
As I stomp upstairs to go to bed, I have the urge to destroy a few things with a baseball bat, which is uncharacteristic for me! I get into bed; sock myself back into my pillows hard (How did I manage to not rap my head on the head board?); I yank the covers up to my chest & slam my fists down by my sides. Ed slowly asks, “Are – you – mad – at – me?” I quickly blurt out, “No. I’m mad at cancer! I just want to destroy some things with a baseball bat!” He tries, unsuccessfully to calm me down with some reasoning, but I’m not in the mood for it. It’s tearing me apart inside because I want & need love & understanding, but how could I expect to get it when I am SO ANGRY at this disease. I am my own worst enemy. I do remember listing a bunch of questions & saying that I know I shouldn’t be mad at God, but right now I’m wondering, “What did I do wrong? Why did this happen to me? I don’t understand it.” By this time I’m crying. In my head, I’m telling God I’m sorry, I know this is wrong, but this is how I’m feeling. I’m sorry, but I’m angry! I’m angry at this disease! I know all the Bible verses, by heart, to quote to myself, but I don’t want to hear them. I’m getting my PhD (Pile it higher & deeper) in rebellion, as I piled on my offenses. I go on for some time. Finally Ed suggests that I take something to help me relax, so I can get some sleep & to be able to get up in time for our 8am appointment. He then puts his arm around me & prays for me. This helps to finally calm me down enough to get some sleep.
In the morning, I am still not in a good mood. We arrive at the doctors’ office. Ed has reshuffled the papers into the 2 stacks & hands them to me to hold on the drive to the office. When we arrive I know he thinks I should give them to the receptionist. I want to walk up to the window & throw them at her so that they will fly all over the floor in a mess, which I know is the wrong thing to do; so, I hand them to Ed – hint, hint. He does the wise thing & hands them to her & lets her know I am there. Thank you, God, for a patient & understanding husband!
A nurse calls my name & greets me in a very cheery tone. I force a smile, & Ed tells her that I am not having a good morning. (Of course, a conversation with a woman at our church, who is a cancer survivor flashes through my head. She told me that she saw every appointment & treatment as an opportunity to be a witness, because she wouldn’t have been there except for having cancer. I thought, “Oh, Patti, what a witness you are today. NOT!”) The nurse tries to cheer me up as she weighs me, draws blood & takes my picture. Can any woman relate to why this will not help to cheer me up? At one point, I make fun of myself in an attempt to pull myself out of the pit. It helps a little. When I meet Dr. Patel, Ed again explains that it is not a good morning for me. I come right out &, politely but bluntly, tell him that I am angry. He tells me that it is quite common for cancer patients to go through the stages of grief after learning they have cancer. It does not surprise him, in the least, that I am angry. I breathe a sigh of relief. As we talk, the anger dissipates. Thank you, God!
We are VERY impressed with Dr. Patel, the medical oncologist. He is able to explain things in very simple language. He keeps asking us questions to make sure we understand & asking if we have questions. We feel very comfortable asking questions. He also echoes the surgeon’s comment that it was backwards to learn that I have breast cancer by finding a malignant lymph node. He has already laid out a treatment plan for me that includes surgery followed by several sessions of chemotherapy, then several sessions of radiation & 5 years of hormonal therapy. However, before he will proceed with the plan, he wants me to have a P.E.T. scan done to check the lymph nodes in the center of my chest & the 2 nodules on my lungs. Even though they are less than 1 cm & he does not think they are malignant, he wants to be sure, rather than wait 6 months, as recommended by the radiologist who read the CT scan in Sept. We had planned to ask about this. Thank you, God.
Next, we meet with the radiology oncologist. These 2 appointments take 4 hours! We learn a lot more about cancer!
The next day Lisa has her 3rd ultra sound. Praise God! What was showing on the ultra sound a week ago is almost gone, when they do the ultra sound at UVA. The doctor also tells her & Dave that she does not have any of the symptoms that usually accompany the condition they were told their baby has. Based on the new ultra sound, he says he cannot give them 100% guarantee, but he feels very confident that their baby is just fine. Praise God! I call the prayer line at church to pass along the praise that baby Cassidy is OK.
Saturday night Ed & I went with Dave & Lisa to the Thomas Road Baptist Church’s 2007 Virginia Christmas Spectacular. It is exactly that – SPECTACULAR! It is more than just the performance. For me, the presence of God is very, very real. One part of the program is a mix of biblical accounts acted out & a narrator speaking to the audience. During one scene Jesus heals a woman who touches him from behind, & he calls her by name. The narrator then talks to the audience about Jesus calling us by name. I can’t recall all of the details because God is speaking to me at the time. He says, “Patti, I am the God that healeth thee, from the top of your head to the soles of your feet.” I am kind of dumbfounded. God repeats the same message. I say, “Thank you, God!” Shortly after that He says, “Cassidy is 100% whole, too.” Since, by that time, we are standing to sing, I reach over & grab Lisa & hug her & tell her what God had just told me about Cassidy. We both hug each other & cry tears of joy!
When we get to the car, I am like an over-excited child. I tell everyone to be quiet, I have something exciting to tell them; I share what God has told me. I explain when it was God said this & that he repeated it. I say, "God told me, 'Patti, I am the Lord that healeth thee, from the top of your head to the soles of your feet.' Now, I don’t think in King James English; so, I don’t think it was my own thought or that I made it up. I trust it was from God. ("I am the Lord that healeth thee" is the last phrase of Exodus 15:26 KJV.) They believe me, but they don't know exactly what to say. They are probably as awe struck as I am. We are at a Christmas production not a healing service. I think it’s Dave who asks if I have any idea when or how God is going to heal me. I say that I really don’t know exactly how or when He will heal me, but I believe He will, because God does not lie. I also believe this means He will heal me of my ulcerative colitis as well as the cancer, if He is going to heal me "from the top of my head to the soles of my feet.” WOW! God is AWESOME!
Of course, I have to share with Ed & Dave that God also told me that "Cassidy is 100% whole!" What a SPECTACULAR night!
I have a discussion about this later with Dave, who is a Liberty University seminary student. Based on what God impressed on me & what he investigated in biblical accounts of God's healing of believers, I’m not expecting a miraculous, instantaneous healing. I believe it will come over time. I expect God to lead me on a journey to the physical healing He intends to bring into my life. I need to be obedient to God's leading & to the instructions of my doctors. I believe a part of the healing will come through the wisdom God gives to my doctors, as they treat me. Another will be God's working through our prayers & the prayers of the people who pray for me. I am still in awe of & humbled by how many people regularly pray for me. Thank you, from the bottom of my heart, if you are one of them & you are reading this! May God richly bless you & meet the needs of your life.
This picture was taken shortly after Cassidy's birth, 3:15pm, April 12, 2008. She is 100% whole, just as God promised!
Dec. 5th, we are scheduled to meet with the medical & radiology oncologists. The night before, Ed reminds me that I have papers to fill out. It’s late when he reminds me, & I’m tired. Filling out papers with my medical history makes me cranky because it’s a reminder of all the recent bad stuff that I’ve gone through. To top it off, I have to fill out 2 sets, & the doctors are in the same office. That makes me crankier. I don’t know why they can’t just make a photo copy of one set. By the time I get through both sets I have them all jumbled up. I don’t know which papers are for which doctor.
As I stomp upstairs to go to bed, I have the urge to destroy a few things with a baseball bat, which is uncharacteristic for me! I get into bed; sock myself back into my pillows hard (How did I manage to not rap my head on the head board?); I yank the covers up to my chest & slam my fists down by my sides. Ed slowly asks, “Are – you – mad – at – me?” I quickly blurt out, “No. I’m mad at cancer! I just want to destroy some things with a baseball bat!” He tries, unsuccessfully to calm me down with some reasoning, but I’m not in the mood for it. It’s tearing me apart inside because I want & need love & understanding, but how could I expect to get it when I am SO ANGRY at this disease. I am my own worst enemy. I do remember listing a bunch of questions & saying that I know I shouldn’t be mad at God, but right now I’m wondering, “What did I do wrong? Why did this happen to me? I don’t understand it.” By this time I’m crying. In my head, I’m telling God I’m sorry, I know this is wrong, but this is how I’m feeling. I’m sorry, but I’m angry! I’m angry at this disease! I know all the Bible verses, by heart, to quote to myself, but I don’t want to hear them. I’m getting my PhD (Pile it higher & deeper) in rebellion, as I piled on my offenses. I go on for some time. Finally Ed suggests that I take something to help me relax, so I can get some sleep & to be able to get up in time for our 8am appointment. He then puts his arm around me & prays for me. This helps to finally calm me down enough to get some sleep.
In the morning, I am still not in a good mood. We arrive at the doctors’ office. Ed has reshuffled the papers into the 2 stacks & hands them to me to hold on the drive to the office. When we arrive I know he thinks I should give them to the receptionist. I want to walk up to the window & throw them at her so that they will fly all over the floor in a mess, which I know is the wrong thing to do; so, I hand them to Ed – hint, hint. He does the wise thing & hands them to her & lets her know I am there. Thank you, God, for a patient & understanding husband!
A nurse calls my name & greets me in a very cheery tone. I force a smile, & Ed tells her that I am not having a good morning. (Of course, a conversation with a woman at our church, who is a cancer survivor flashes through my head. She told me that she saw every appointment & treatment as an opportunity to be a witness, because she wouldn’t have been there except for having cancer. I thought, “Oh, Patti, what a witness you are today. NOT!”) The nurse tries to cheer me up as she weighs me, draws blood & takes my picture. Can any woman relate to why this will not help to cheer me up? At one point, I make fun of myself in an attempt to pull myself out of the pit. It helps a little. When I meet Dr. Patel, Ed again explains that it is not a good morning for me. I come right out &, politely but bluntly, tell him that I am angry. He tells me that it is quite common for cancer patients to go through the stages of grief after learning they have cancer. It does not surprise him, in the least, that I am angry. I breathe a sigh of relief. As we talk, the anger dissipates. Thank you, God!
We are VERY impressed with Dr. Patel, the medical oncologist. He is able to explain things in very simple language. He keeps asking us questions to make sure we understand & asking if we have questions. We feel very comfortable asking questions. He also echoes the surgeon’s comment that it was backwards to learn that I have breast cancer by finding a malignant lymph node. He has already laid out a treatment plan for me that includes surgery followed by several sessions of chemotherapy, then several sessions of radiation & 5 years of hormonal therapy. However, before he will proceed with the plan, he wants me to have a P.E.T. scan done to check the lymph nodes in the center of my chest & the 2 nodules on my lungs. Even though they are less than 1 cm & he does not think they are malignant, he wants to be sure, rather than wait 6 months, as recommended by the radiologist who read the CT scan in Sept. We had planned to ask about this. Thank you, God.
Next, we meet with the radiology oncologist. These 2 appointments take 4 hours! We learn a lot more about cancer!
The next day Lisa has her 3rd ultra sound. Praise God! What was showing on the ultra sound a week ago is almost gone, when they do the ultra sound at UVA. The doctor also tells her & Dave that she does not have any of the symptoms that usually accompany the condition they were told their baby has. Based on the new ultra sound, he says he cannot give them 100% guarantee, but he feels very confident that their baby is just fine. Praise God! I call the prayer line at church to pass along the praise that baby Cassidy is OK.
Saturday night Ed & I went with Dave & Lisa to the Thomas Road Baptist Church’s 2007 Virginia Christmas Spectacular. It is exactly that – SPECTACULAR! It is more than just the performance. For me, the presence of God is very, very real. One part of the program is a mix of biblical accounts acted out & a narrator speaking to the audience. During one scene Jesus heals a woman who touches him from behind, & he calls her by name. The narrator then talks to the audience about Jesus calling us by name. I can’t recall all of the details because God is speaking to me at the time. He says, “Patti, I am the God that healeth thee, from the top of your head to the soles of your feet.” I am kind of dumbfounded. God repeats the same message. I say, “Thank you, God!” Shortly after that He says, “Cassidy is 100% whole, too.” Since, by that time, we are standing to sing, I reach over & grab Lisa & hug her & tell her what God had just told me about Cassidy. We both hug each other & cry tears of joy!
When we get to the car, I am like an over-excited child. I tell everyone to be quiet, I have something exciting to tell them; I share what God has told me. I explain when it was God said this & that he repeated it. I say, "God told me, 'Patti, I am the Lord that healeth thee, from the top of your head to the soles of your feet.' Now, I don’t think in King James English; so, I don’t think it was my own thought or that I made it up. I trust it was from God. ("I am the Lord that healeth thee" is the last phrase of Exodus 15:26 KJV.) They believe me, but they don't know exactly what to say. They are probably as awe struck as I am. We are at a Christmas production not a healing service. I think it’s Dave who asks if I have any idea when or how God is going to heal me. I say that I really don’t know exactly how or when He will heal me, but I believe He will, because God does not lie. I also believe this means He will heal me of my ulcerative colitis as well as the cancer, if He is going to heal me "from the top of my head to the soles of my feet.” WOW! God is AWESOME!
Of course, I have to share with Ed & Dave that God also told me that "Cassidy is 100% whole!" What a SPECTACULAR night!
I have a discussion about this later with Dave, who is a Liberty University seminary student. Based on what God impressed on me & what he investigated in biblical accounts of God's healing of believers, I’m not expecting a miraculous, instantaneous healing. I believe it will come over time. I expect God to lead me on a journey to the physical healing He intends to bring into my life. I need to be obedient to God's leading & to the instructions of my doctors. I believe a part of the healing will come through the wisdom God gives to my doctors, as they treat me. Another will be God's working through our prayers & the prayers of the people who pray for me. I am still in awe of & humbled by how many people regularly pray for me. Thank you, from the bottom of my heart, if you are one of them & you are reading this! May God richly bless you & meet the needs of your life.
This picture was taken shortly after Cassidy's birth, 3:15pm, April 12, 2008. She is 100% whole, just as God promised!
Ch 7 – The Waiting Game
Original post 4/4/08
After the Spectacular weekend, I have to return to an ordinary week. Wednesday morning, I receive a call from the Breast Health Center to let me know that my genetic test results have come back; this is only 2½ weeks after we sent the request & tissue sample. Thank you, God! My cancer is not genetic. That is not so ordinary!
I go by myself, for blood work, for the 3rd time in a week, to “verify the accuracy of the results of the blood work a week ago,” at Dr. Patel’s office. The nurse draws the blood & packages it to send it out to an independent lab. I ask if she can tell me what is going on or if she can find someone who can tell me. She leaves & came back with Dr. Patel. He explains that a tumor marker in my blood is elevated; it should be about 40; it is 211. This may mean that I have cancer cells circulating in my blood stream that might metastasize to other parts of my body. The independent lab will analyze the blood drawn to determine whether or not this is the case, since the local hospital does not have the lab equipment to do this test. He will discuss the results at my next appointment.
When I get into my car I ask myself, “Why did I come by myself?” Then God reminds me that He promised me “this is not a death sentence.” As soon as I am reminded of this, I say to the enemy, “You’re not going to steal my peace!” I turn on our local Christian radio station & drive home singing & reminding the enemy a few more times that he is not going to steal my peace.
The next day was the P.E.T. scan, at 8am. The day before the scan you eat a high protein, low carb diet. 2 hours before the scan you drink 32 oz. of water, then you are injected with radioactive glucose; you wait for about 20 min. & are then scanned like a CT scan. Cancer cells are gluttons for sugar & absorb any form of sugar/glucose about 5 times faster than healthy cells; therefore, the cancer cells suck up the glucose, & they show up as “metabolic activity,” in different colors, which indicate the intensity of activity, where there is a high enough concentration of cancer cells that can be detected by the scanning equipment. As a result, we will now know where I have cancer cells.
The next day, Dec. 14th, I meet with Dr. Pam to discuss what I can do about my non-stop migraines. Ever since I finished the HRT they increased in frequency & severity. I am waking up every morning with a migraine, & I am still teaching 4 days a week. (Because of my history of migraines, I am never scheduled to teach a class earlier than 11am.) I bring her up to date & make sure she has copies of all my test results. She tells me she can prescribe a new medicine that may be more effective in treating the migraines. (I also make sure I put in a prayer request, on Sunday, at church, for my non-stop migraines.)
We ask her to arrange a second opinion appointment at Geisinger for us, since we have been urged by numerous friends to seek a second opinion. I also ask if she was aware of any doctor who can advise me in terms of nutrition &/or supplements to keep my immune system strong as I undergo cancer treatment. She gives me the name of Dr. Powers, who is a radiology oncologist & also runs the Powers Clinic for this specific purpose.
I tell her about the P.E.T. scan & my concern over another cancer. She says that people often get 2 different cancers in a lifetime, but the chance of having 2 different cancers at the same time is remote. She does not think it is likely that I will find the lymph nodes or nodules on the lungs are malignant. I hoped she is right. She even tries calling the hospital to get the results, but they are not yet recorded on the system. I will have to wait until our scheduled appointment with Dr. Patel, on the 27th. That’s an awful long time to wait!
Let me explain our impatience over the lengthy delay in getting to the final diagnosis & treatment by explaining the rate of growth of cancer cells. It takes 23 to 209 days for a tumor to double in size. Doubling, of course, means 1 cell becomes 2; 2 become 4; 4 become 8; 8 become 16; etc. . . . The average growth rate is approximately 100 days between doubling in size of the tumor. At this rate, it takes approximately 6 – 9 years for a tumor to reach 1 centimeter. It takes approx. 1 billion cells to form a 1 cm breast tumor. On average, most cancers have been around for 6 to 10 years before they can be felt as a lump or seen on a mammogram.
I had a 2cm breast biopsy of mere calcifications that was malignant, with no breast lump, & I know the surgeon did not get clean margins. There are still cancer cells in the breast tissue. The lymph node biopsy was over 2cm. The surgeon had a difficult time finding the lymph node; it was not a well defined, hard lump. I knew where it was because it hurt when I pushed on it. Before they put me under for surgery, the surgeon came in & asked me to help him find it; he used a permanent marker to mark the spot; then they put me out. How did I know whether or not there were more malignant lymph nodes? From mid-July to Thanksgiving was more than 100 days. We knew that any cancer cells not removed by the 2 biopsies had, by now, doubled in number, & we are not talking tens, hundreds, or even thousands of cancer cells doubling. We were guessing we’re talking billions!
Can you see why we think surgery & starting treatment is urgent? But we know we have to trust God, while letting the doctors know we are very concerned about the seemingly slow pace of the process. Whether we like it or not, we have to check out every possibility. A wrong decision could jeopardize my life.
After the Spectacular weekend, I have to return to an ordinary week. Wednesday morning, I receive a call from the Breast Health Center to let me know that my genetic test results have come back; this is only 2½ weeks after we sent the request & tissue sample. Thank you, God! My cancer is not genetic. That is not so ordinary!
I go by myself, for blood work, for the 3rd time in a week, to “verify the accuracy of the results of the blood work a week ago,” at Dr. Patel’s office. The nurse draws the blood & packages it to send it out to an independent lab. I ask if she can tell me what is going on or if she can find someone who can tell me. She leaves & came back with Dr. Patel. He explains that a tumor marker in my blood is elevated; it should be about 40; it is 211. This may mean that I have cancer cells circulating in my blood stream that might metastasize to other parts of my body. The independent lab will analyze the blood drawn to determine whether or not this is the case, since the local hospital does not have the lab equipment to do this test. He will discuss the results at my next appointment.
When I get into my car I ask myself, “Why did I come by myself?” Then God reminds me that He promised me “this is not a death sentence.” As soon as I am reminded of this, I say to the enemy, “You’re not going to steal my peace!” I turn on our local Christian radio station & drive home singing & reminding the enemy a few more times that he is not going to steal my peace.
The next day was the P.E.T. scan, at 8am. The day before the scan you eat a high protein, low carb diet. 2 hours before the scan you drink 32 oz. of water, then you are injected with radioactive glucose; you wait for about 20 min. & are then scanned like a CT scan. Cancer cells are gluttons for sugar & absorb any form of sugar/glucose about 5 times faster than healthy cells; therefore, the cancer cells suck up the glucose, & they show up as “metabolic activity,” in different colors, which indicate the intensity of activity, where there is a high enough concentration of cancer cells that can be detected by the scanning equipment. As a result, we will now know where I have cancer cells.
The next day, Dec. 14th, I meet with Dr. Pam to discuss what I can do about my non-stop migraines. Ever since I finished the HRT they increased in frequency & severity. I am waking up every morning with a migraine, & I am still teaching 4 days a week. (Because of my history of migraines, I am never scheduled to teach a class earlier than 11am.) I bring her up to date & make sure she has copies of all my test results. She tells me she can prescribe a new medicine that may be more effective in treating the migraines. (I also make sure I put in a prayer request, on Sunday, at church, for my non-stop migraines.)
We ask her to arrange a second opinion appointment at Geisinger for us, since we have been urged by numerous friends to seek a second opinion. I also ask if she was aware of any doctor who can advise me in terms of nutrition &/or supplements to keep my immune system strong as I undergo cancer treatment. She gives me the name of Dr. Powers, who is a radiology oncologist & also runs the Powers Clinic for this specific purpose.
I tell her about the P.E.T. scan & my concern over another cancer. She says that people often get 2 different cancers in a lifetime, but the chance of having 2 different cancers at the same time is remote. She does not think it is likely that I will find the lymph nodes or nodules on the lungs are malignant. I hoped she is right. She even tries calling the hospital to get the results, but they are not yet recorded on the system. I will have to wait until our scheduled appointment with Dr. Patel, on the 27th. That’s an awful long time to wait!
Let me explain our impatience over the lengthy delay in getting to the final diagnosis & treatment by explaining the rate of growth of cancer cells. It takes 23 to 209 days for a tumor to double in size. Doubling, of course, means 1 cell becomes 2; 2 become 4; 4 become 8; 8 become 16; etc. . . . The average growth rate is approximately 100 days between doubling in size of the tumor. At this rate, it takes approximately 6 – 9 years for a tumor to reach 1 centimeter. It takes approx. 1 billion cells to form a 1 cm breast tumor. On average, most cancers have been around for 6 to 10 years before they can be felt as a lump or seen on a mammogram.
I had a 2cm breast biopsy of mere calcifications that was malignant, with no breast lump, & I know the surgeon did not get clean margins. There are still cancer cells in the breast tissue. The lymph node biopsy was over 2cm. The surgeon had a difficult time finding the lymph node; it was not a well defined, hard lump. I knew where it was because it hurt when I pushed on it. Before they put me under for surgery, the surgeon came in & asked me to help him find it; he used a permanent marker to mark the spot; then they put me out. How did I know whether or not there were more malignant lymph nodes? From mid-July to Thanksgiving was more than 100 days. We knew that any cancer cells not removed by the 2 biopsies had, by now, doubled in number, & we are not talking tens, hundreds, or even thousands of cancer cells doubling. We were guessing we’re talking billions!
Can you see why we think surgery & starting treatment is urgent? But we know we have to trust God, while letting the doctors know we are very concerned about the seemingly slow pace of the process. Whether we like it or not, we have to check out every possibility. A wrong decision could jeopardize my life.
Ch 8 – Stave IV Cancer & Still Praising God
Original post 4/16/08
The technician who did the PET scan told me it would take 24 - 48 hours for the radiologist to read the scan, write the results into a report for the oncologist & record it on the hospital system. I was sure I could get the results by Mon., Dec. 17th; so, I called Dr. Patel’s office. They weren’t available. I tried again Tuesday. Still I had no luck.
Both days we had family & friends calling, sending emails & asking us in person if we knew the results yet. We are frustrated & getting very anxious. Wednesday, Ed & I decide to double our efforts; I call Dr. Patel’s office & he calls the Breast Health Center. We wait to see which one of us will get a call back 1st. Ed wins. The nurse tells him the PET scan shows some activity & that Dr. Patel wants me to come to his other office, which is an additional 1/2 drive from our home, the next day. She makes it sound rather casual & minor so that we assume he probably is bringing me in to tell me that he wants to run some other test before next week’s appointment.
Ed has a busy day at the college that includes a couple of important meetings. I tell him that I will be fine to go by myself & insist that he stay & attend the meetings. He isn’t keen on the idea of me going by myself & repeats that he can arrange to take me to the appointment. I insist that he stay at the college. As I think it over, I decide that it will be better to have someone go with me, to take notes. I do have a tendency to forget some details when I have to recount 30 – 60 minutes spent talking with a doctor. If someone else takes some notes, I can reconstruct the conversation pretty well.
(You are wondering how I have written my story & blogs, aren’t you? The appointments are marked on a calendar; we have a notebook with notes from every appointment; & I have emails I’ve sent to family & friends over these several months. These are all great references.)
I call a friend who is a nurse who had offered to go with me to appointments, but she is out of town. My sister, Jennifer, just happen to call to see if I am at home, because she has something she needs to drop off to me. When she arrives, her 2 daughters, Hannah & Lydia, are with her. Lydia meets me first, with a big grin on her face, & she holds out a handful of handmade cards. Her second grade class has made get well cards for me! I nearly cried! It is so awesome! I read each one. They all address me as Aunt Patti, which I think is so sweet. They drew lots of hearts & flowers, both of which I love! I will keep them forever. For many weeks, I show them to everyone who comes to visit. After raving about the cards, I tell Jennifer about my appointment with Dr. Patel the next day. She says she is available to take me.
Thursday morning, I stop at Meadowbrook Christian School, where my nieces attend & Jennifer is volunteering that morning, to pick her up. I tell her that I typed up a list of questions & left room for her to write Dr. Patel’s answers. I have never been to this office before; so, I have done a map quest to locate it. We can’t find a sign for the street we are supposed to turn onto; we make an educated guess & find the office with little trouble. Thanks God!
When we see Dr. Patel, I introduce him to Jennifer. She has the list of questions & her pen all ready to fill in the answers, until he announces the results of the PET scan. At that point, she immediately flips the list of questions over & starts writing on the back, which was blank. His 1st statement is, “The PET scan shows intense activity.” I am thinking, ‘This is not what the nurse told Ed yesterday!’ Dr. Patel explains further that I have stage IV metastatic cancer. I have WHAT? (F.Y.I. 1” = about 2.5cm) There is another 2.3cm of breast tissue that is malignant; 4 more lymph nodes under my left arm are malignant, the largest is 3.2cm; multiple lymph nodes in the mediastimun (area behind & around the breastbone) are malignant; there are small nodules on each lung that are malignant. When this scan was done it was a combination CT/PET scan. The radiologist noted that when comparing it with the CT scan in September to this scan, the malignant lymph nodes & nodules on the lungs have increased in size & new spots have appeared that were not evident in September. Dr. Patel says that most of the lymph nodes are less than 1 cm. I find it interesting that 4 physicians, 2 oncologists & 2 physician’s assistants have physically examined my breasts & arm pits for tumors & never found any. The only one I found was the one that was biopsied, only because it caused shoulder pain. That’s what sent me to the doctor in the first place. I thank God the cancer went to that lymph node to alert me to the fact that something was wrong, & I thank God that I did not ignore the pain!
Now What? My head is reeling! My peace is teetering! I am sending up an S.O.S. prayer. I try to maintain my composure so I can ask questions. Jenn is trying to make sure she is getting notes written down accurately; so, she asks questions to clarify Dr. Patel’s statements & explanations. I can tell that Jenn is also shaken by this unexpected news, & it is making her rather nervous. As Dr. Patel repeats something, it either helps me to get it straight or gives me time to think. There is so much in this PET scan report! I ask if I can have a copy of it. Dr. Patel goes to find a nurse to ask her to make a copy. When he steps out, I grab my head & want to collapse & cry. I am shaking, but I take a BIG, DEEP breath & say aloud, “I can’t let the enemy steal my peace! I can’t let the enemy steal my peace!” Jenn reassures me, “That’s right!” I know she would like to say more but is too overwhelmed by what she has just heard to put her feelings into words. I also state that God has told me at the very beginning that “this is not a death sentence, and I know God doesn’t lie.” I tell Jenn, “I would have been so stupid to come to this appointment alone!” I also tell her that I am glad I have a family member with me for an appointment like this! However, she tells me she doesn’t want to go to any more appointments with me. I can understand her not wanting to go on that kind of appointment, because I would prefer not to go to this kind of appointment again. However, I know she loves me & would do anything I ask her to do. It is very hard when you are blindsided, as we are this day, to react in the way you think you will, in this kind of unexpected situation.
When Dr. Patel returns, I think he ask if I am OK. I want to know, “What does this mean?” There is a fleeting thought of life expectancy, but a stronger plea for ‘what can you do to help me survive?’ which my question does not express very well. He says that he knows he already dropped a ton of bricks on me & does not want to discuss that at this time. His follow-up leads me to believe that he took my question & pleading look to mean, how long will I live, because he says that we will discuss more at our appointment next week. I seem to remember him making some reference to his reason for not discussing life expectancy, because I think I remember telling him that God told me, before I got the results of the first biopsy, that the biopsy is malignant but the cancer is not a death sentence. He affirmed my positive attitude & outlook.
Surgery, which had been tentatively scheduled for January 8th, is off & so is the radiation. Instead, I am to have a MUGA scan done the next week, to be sure my heart is strong enough to handle chemotherapy.
I have done some reading & ask if Dr. Patel recommends a PIC line or mediport, so I will not have to have an IV put in each time I have a chemo treatment. He tells me a PIC line is just asking for trouble. He has already scheduled an appointment for a mediport to be inserted next week, so chemo therapy can begin the 1st week of January.
All of a sudden, things seem to be moving too fast, & Ed isn’t there to say, “OK, let’s go, or hold on; we have some more questions; this is moving too fast.” As much as we have wanted things to move a little faster, this is more than a little scary! I just learned, less than half an hour ago, that my cancer has metastasized & is stage IV. I need time to think, talk this over with Ed, & time to get the 2nd opinion we were seeking.
I ask if I can see the actual PET scan on the computer screen. Dr. Patel goes to set it up for us. While he does this, I tell Jenn about my experience at the VA Christmas Spectacular when God told me, “I am the God that healeth thee from the top of your head to the soles of your feet.” As much as I want her to know this & to find some peace in knowing it, I need to remind myself. It helps bring my focus back onto God, His promise & His ability to help me through tough times; I am able to reconnect with the peace that comes from Him.
We look at the scan. The middle of my chest looks like someone painted black polka dots all over it. (I later learned that the radiologist sees a color version of the scan. Specific colors indicate whether or not a site is malignant. If it is cancerous, the color indicates the intensity of the metabolic activity at each site.) It satisfies my curiosity, but is a little unsettling, at the same time. While we wait for the receptionist to schedule appointments, I ask Jenn if she will call Ed & fill him in on some of the information we learned at this appointment. Of course, he is shocked & says he will be home as soon as his last meeting is over; he asks Jenn to drive me all the way home!
As we leave, I ask Jenn if she would mind taking me to 2 stores to pick up 2 Christmas presents that I cannot find at the mall closer to home. She agrees. Then I ask if we can stop for some lunch; I am starved. She is a little taken back by my side-trip. It helps me to keep things in their proper perspective. My grandson & unborn granddaughter, for whom I am buying the Christmas gifts, are much more important than the pity party I could have for myself that afternoon. Worrying & fretting cannot change the diagnosis, & God is in control of the outcome.
Jenn tells me later that she called Ed, after she dropped me off at the mall door & went to park the car, to make sure he isn’t, in her words, “freaking out,” after he had a little time for the news to sink in. He isn’t; he is just anxious to get home so the 2 of us can talk about the appointment together.
When we get back to MCS, I tell Jenn I can drive home. She tells me she promised Ed she will drive me all the way home. I assured her that I can drive the rest of the way home. She is convinced by my shopping trip & stop for lunch that I am able to do so. She later tells me that she commented to persons, who inquired, upon her return, that I was amazingly calm. I can’t say it is because I am naturally a calm person who can handle devastating news. On the contrary (just ask my family), I am able to handle this because God gives me a “peace that transcends understanding.” I don’t even understand it, but I PRAISE GOD FOR IT!
The technician who did the PET scan told me it would take 24 - 48 hours for the radiologist to read the scan, write the results into a report for the oncologist & record it on the hospital system. I was sure I could get the results by Mon., Dec. 17th; so, I called Dr. Patel’s office. They weren’t available. I tried again Tuesday. Still I had no luck.
Both days we had family & friends calling, sending emails & asking us in person if we knew the results yet. We are frustrated & getting very anxious. Wednesday, Ed & I decide to double our efforts; I call Dr. Patel’s office & he calls the Breast Health Center. We wait to see which one of us will get a call back 1st. Ed wins. The nurse tells him the PET scan shows some activity & that Dr. Patel wants me to come to his other office, which is an additional 1/2 drive from our home, the next day. She makes it sound rather casual & minor so that we assume he probably is bringing me in to tell me that he wants to run some other test before next week’s appointment.
Ed has a busy day at the college that includes a couple of important meetings. I tell him that I will be fine to go by myself & insist that he stay & attend the meetings. He isn’t keen on the idea of me going by myself & repeats that he can arrange to take me to the appointment. I insist that he stay at the college. As I think it over, I decide that it will be better to have someone go with me, to take notes. I do have a tendency to forget some details when I have to recount 30 – 60 minutes spent talking with a doctor. If someone else takes some notes, I can reconstruct the conversation pretty well.
(You are wondering how I have written my story & blogs, aren’t you? The appointments are marked on a calendar; we have a notebook with notes from every appointment; & I have emails I’ve sent to family & friends over these several months. These are all great references.)
I call a friend who is a nurse who had offered to go with me to appointments, but she is out of town. My sister, Jennifer, just happen to call to see if I am at home, because she has something she needs to drop off to me. When she arrives, her 2 daughters, Hannah & Lydia, are with her. Lydia meets me first, with a big grin on her face, & she holds out a handful of handmade cards. Her second grade class has made get well cards for me! I nearly cried! It is so awesome! I read each one. They all address me as Aunt Patti, which I think is so sweet. They drew lots of hearts & flowers, both of which I love! I will keep them forever. For many weeks, I show them to everyone who comes to visit. After raving about the cards, I tell Jennifer about my appointment with Dr. Patel the next day. She says she is available to take me.
Thursday morning, I stop at Meadowbrook Christian School, where my nieces attend & Jennifer is volunteering that morning, to pick her up. I tell her that I typed up a list of questions & left room for her to write Dr. Patel’s answers. I have never been to this office before; so, I have done a map quest to locate it. We can’t find a sign for the street we are supposed to turn onto; we make an educated guess & find the office with little trouble. Thanks God!
When we see Dr. Patel, I introduce him to Jennifer. She has the list of questions & her pen all ready to fill in the answers, until he announces the results of the PET scan. At that point, she immediately flips the list of questions over & starts writing on the back, which was blank. His 1st statement is, “The PET scan shows intense activity.” I am thinking, ‘This is not what the nurse told Ed yesterday!’ Dr. Patel explains further that I have stage IV metastatic cancer. I have WHAT? (F.Y.I. 1” = about 2.5cm) There is another 2.3cm of breast tissue that is malignant; 4 more lymph nodes under my left arm are malignant, the largest is 3.2cm; multiple lymph nodes in the mediastimun (area behind & around the breastbone) are malignant; there are small nodules on each lung that are malignant. When this scan was done it was a combination CT/PET scan. The radiologist noted that when comparing it with the CT scan in September to this scan, the malignant lymph nodes & nodules on the lungs have increased in size & new spots have appeared that were not evident in September. Dr. Patel says that most of the lymph nodes are less than 1 cm. I find it interesting that 4 physicians, 2 oncologists & 2 physician’s assistants have physically examined my breasts & arm pits for tumors & never found any. The only one I found was the one that was biopsied, only because it caused shoulder pain. That’s what sent me to the doctor in the first place. I thank God the cancer went to that lymph node to alert me to the fact that something was wrong, & I thank God that I did not ignore the pain!
Now What? My head is reeling! My peace is teetering! I am sending up an S.O.S. prayer. I try to maintain my composure so I can ask questions. Jenn is trying to make sure she is getting notes written down accurately; so, she asks questions to clarify Dr. Patel’s statements & explanations. I can tell that Jenn is also shaken by this unexpected news, & it is making her rather nervous. As Dr. Patel repeats something, it either helps me to get it straight or gives me time to think. There is so much in this PET scan report! I ask if I can have a copy of it. Dr. Patel goes to find a nurse to ask her to make a copy. When he steps out, I grab my head & want to collapse & cry. I am shaking, but I take a BIG, DEEP breath & say aloud, “I can’t let the enemy steal my peace! I can’t let the enemy steal my peace!” Jenn reassures me, “That’s right!” I know she would like to say more but is too overwhelmed by what she has just heard to put her feelings into words. I also state that God has told me at the very beginning that “this is not a death sentence, and I know God doesn’t lie.” I tell Jenn, “I would have been so stupid to come to this appointment alone!” I also tell her that I am glad I have a family member with me for an appointment like this! However, she tells me she doesn’t want to go to any more appointments with me. I can understand her not wanting to go on that kind of appointment, because I would prefer not to go to this kind of appointment again. However, I know she loves me & would do anything I ask her to do. It is very hard when you are blindsided, as we are this day, to react in the way you think you will, in this kind of unexpected situation.
When Dr. Patel returns, I think he ask if I am OK. I want to know, “What does this mean?” There is a fleeting thought of life expectancy, but a stronger plea for ‘what can you do to help me survive?’ which my question does not express very well. He says that he knows he already dropped a ton of bricks on me & does not want to discuss that at this time. His follow-up leads me to believe that he took my question & pleading look to mean, how long will I live, because he says that we will discuss more at our appointment next week. I seem to remember him making some reference to his reason for not discussing life expectancy, because I think I remember telling him that God told me, before I got the results of the first biopsy, that the biopsy is malignant but the cancer is not a death sentence. He affirmed my positive attitude & outlook.
Surgery, which had been tentatively scheduled for January 8th, is off & so is the radiation. Instead, I am to have a MUGA scan done the next week, to be sure my heart is strong enough to handle chemotherapy.
I have done some reading & ask if Dr. Patel recommends a PIC line or mediport, so I will not have to have an IV put in each time I have a chemo treatment. He tells me a PIC line is just asking for trouble. He has already scheduled an appointment for a mediport to be inserted next week, so chemo therapy can begin the 1st week of January.
All of a sudden, things seem to be moving too fast, & Ed isn’t there to say, “OK, let’s go, or hold on; we have some more questions; this is moving too fast.” As much as we have wanted things to move a little faster, this is more than a little scary! I just learned, less than half an hour ago, that my cancer has metastasized & is stage IV. I need time to think, talk this over with Ed, & time to get the 2nd opinion we were seeking.
I ask if I can see the actual PET scan on the computer screen. Dr. Patel goes to set it up for us. While he does this, I tell Jenn about my experience at the VA Christmas Spectacular when God told me, “I am the God that healeth thee from the top of your head to the soles of your feet.” As much as I want her to know this & to find some peace in knowing it, I need to remind myself. It helps bring my focus back onto God, His promise & His ability to help me through tough times; I am able to reconnect with the peace that comes from Him.
We look at the scan. The middle of my chest looks like someone painted black polka dots all over it. (I later learned that the radiologist sees a color version of the scan. Specific colors indicate whether or not a site is malignant. If it is cancerous, the color indicates the intensity of the metabolic activity at each site.) It satisfies my curiosity, but is a little unsettling, at the same time. While we wait for the receptionist to schedule appointments, I ask Jenn if she will call Ed & fill him in on some of the information we learned at this appointment. Of course, he is shocked & says he will be home as soon as his last meeting is over; he asks Jenn to drive me all the way home!
As we leave, I ask Jenn if she would mind taking me to 2 stores to pick up 2 Christmas presents that I cannot find at the mall closer to home. She agrees. Then I ask if we can stop for some lunch; I am starved. She is a little taken back by my side-trip. It helps me to keep things in their proper perspective. My grandson & unborn granddaughter, for whom I am buying the Christmas gifts, are much more important than the pity party I could have for myself that afternoon. Worrying & fretting cannot change the diagnosis, & God is in control of the outcome.
Jenn tells me later that she called Ed, after she dropped me off at the mall door & went to park the car, to make sure he isn’t, in her words, “freaking out,” after he had a little time for the news to sink in. He isn’t; he is just anxious to get home so the 2 of us can talk about the appointment together.
When we get back to MCS, I tell Jenn I can drive home. She tells me she promised Ed she will drive me all the way home. I assured her that I can drive the rest of the way home. She is convinced by my shopping trip & stop for lunch that I am able to do so. She later tells me that she commented to persons, who inquired, upon her return, that I was amazingly calm. I can’t say it is because I am naturally a calm person who can handle devastating news. On the contrary (just ask my family), I am able to handle this because God gives me a “peace that transcends understanding.” I don’t even understand it, but I PRAISE GOD FOR IT!
Ch 9 – Diagnosis Domino Effect
Original post 5/2/08
Ed arrived home before me, after my Thursday appointment, and wondered why I wasn’t home yet. He called my cell phone & found that I was almost home.
Since he knows me better than anyone else, he is expecting me to be very upset. He thinks I am “amazingly calm.” Again, I give the credit to God’s “peace that transcends understanding.” I'm not in denial; I know the facts, but I also know what God promised & that he does not lie. However, I readily welcome Ed’s reassuring embrace! I tell him that I am planning on being around for a long time, since God has told me that this is not a death sentence.
Ed & I go over the notes from the appointment. Jennifer did such a good job of taking notes & asking clarifying questions that I am able to use her notes to explain everything to him.
This diagnosis set up a domino effect. Several other things need to happen & happen very fast, if we are going to follow Dr. Patel’s new plan & begin chemotherapy the 1st week of January! We have so many things to take care of that it is a good thing that the semester has ended at the college!
We talk about the 2nd opinion appointment, at Geisinger. It needs to be rescheduled for an earlier date & with an oncologist, not a surgeon; so, I call the office of the surgeon. The nurse or receptionist who answers was very understanding & helpful. She calls oncology for me, makes the appointment, & calls me back within 15 minutes, with an appointment, with an oncologist, Monday Dec. 24th. She then tells me she will immediately forward all of the medical records she has already received & call the hospital that did my PET scan to ask to have it sent by FedEx to the oncologist. (Wow! Thank you God for having this woman answer my call!) Not long after that call, I receive another call, telling me I can pick up a CD & the written report of the PET scan, by noon Saturday, to take with us Monday. I can’t believe how quickly this all happens! Thank you God!
Although we are very comfortable in working with Dr. Patel, we have been urged, by numerous people, to get a 2nd opinion. We think it will be wise to heed their advice. We are only beginning to learn about cancer & available treatment options. The individuals most persistent about our seeking a 2nd opinion are those who work in the medical field, who have dealt with cancer or both.
We also need to put an appointment with Dr. Powers on our ASAP list. Dr. Powers is a full–time radiology oncologist; Wednesdays he runs the Powers Clinic to treat patients with alternative medicine – primarily nutrition & nutritional supplements, rather than additional drugs & chemicals. He is the doctor Dr. Pam told me could help me to strengthen my immune system & help me to tolerate chemotherapy better, without interfering with the effectiveness of my treatment. I am especially concerned about chemotherapy, because I have ulcerative colitis, which we are sure will be a complication, if I am to undergo chemotherapy.
Ed contacts his office. He is told that I need to fill out several medical history & information forms & sign consent forms so that Dr. Powers can access my medical records. Upon receiving my completed paperwork, it will be 3 weeks before his office will contact me to schedule an appointment at the Powers Clinic. If I am to start chemotherapy the 1st week of January, we need to get on this right away! The receptionist emails the forms to me so I can begin filling them out immediately. I can drop them off at the office Dec. 26th.
I remember making a remark to Ed about the fact that I am still baffled by the fact that I have gone every year for a mammogram & have taken care of myself so that I thought my risk of developing breast cancer was low. In the past few years, after the kids were on their own, I have become more lax about my diet & exercise, but the cancer did not develop in just the past few years. Growing up, I was always very active & ate a reasonably healthy diet. In 1981, I started learning about nutrition & supplements & made major changes to our family’s diet. I even taught aerobics & included some instruction on nutrition as a part of the class. Some would have called me a health nut.
When I had my yearly mammograms, as I waited for the x-ray technician, I read the check list on the wall & reassured myself that my risk for breast cancer is low. Now, here I am with stage IV metastasized breast cancer, & I never had a detectable breast lump or even a shadow on an x-ray. I just don’t understand it. It is even more amazing to think that this was silently going on inside my body for 8–10 years!
I have to stop this train of thought. I cannot do anything change my current diagnosis. Looking backwards is counterproductive. Looking forward is my only choice. I’m sure God has a plan & purpose in all of this. He could have stopped the cancer or revealed it sooner, but He’s chosen to allow it to continue, undetected, until now. I trust He will provide for my needs, as I travel this journey.
We, of course, talk about our mortality. After my auto accident, in 1999, I was very aware of the fact that every day is a gift! We know that no one is guaranteed tomorrow, & neither of us wants to live alone without the other.
We talk, in generalities, about “couples with one spouse who has a terminal disease.” This is a safe way to make sure we are on the same page in our thinking. It’s also a safe way to say, “What if I’m wrong about beating the cancer & living a long time; what would I want to do?” I know the possibility exists that I could be wrong, & I know that I do not know God’s definition of “long” life, for me specifically. I take it literally. I trust God, & I trust that He spoke to me in a way that I recognized His voice as His voice. I think if His meaning was different than the way I took it, He would adjust my thinking.
Ed & I had already talked about travelling more & have scheduled some vacations for the coming year. We briefly discuss a few more destinations we might schedule, which we have been putting off. I am hesitant to schedule any more vacations until I know the chemotherapy schedule. Because my cancer was now classified as stage IV, I was just guessing that I might have to go through more cycles than when we thought that I was either stage I or II & would have chemotherapy after surgery.
As we talk, I am so aware of just why I love Ed & why I married him. He is so thoughtful & caring. He is very sensitive & puts my needs & desires ahead of his own. Thank you God, for this wonderful man!
The kids are coming home for Christmas, but we can’t wait until they come home to tell them about this diagnosis. This is the most difficult round of calls to make & for them to get. I think they are more shocked, as we were, by the diagnosis of metastasized, stage IV breast cancer than by the original diagnosis of breast cancer. We answer as many of their questions as we can & invite them to go with us to the doctors’ appointments next week.
We are glad that we will be together, as a family, for a longer period of time, over Christmas. If they are unable to go with us, they can still contribute to our list of questions to ask when we meet with each of the doctors.
All of this is exhausting! We are so looking forward to relaxing & spending quality time with the kids!
Lisa & Dave came home Friday night & brought me a thoughtful gift book titled What Cancer Cannot Do. It is a small book packed with a ton of encouragement. It was written by a woman who has had 3 types of cancer & recurrences. It has 3 or 4, two-page readings under the following 10 headings:
Cancer is so limited it cannot: cripple God’s love; shatter hope; corrode faith; destroy peace; kill friendship; shut out memories; silence courage; invade the soul; steal eternal life; or conquer the spirit.
I picked it up & read it as often as I can, so that I finish it in 2 days. I think there should be several copies of it in every oncologist’s waiting room. (It’s also a good gift idea for anyone you know with cancer. If you have cancer buy one for yourself.)
With all that was going on over the past few months, I never went shopping on my own; therefore, I had not bought Ed any Christmas gifts. When the mall is really crowded I need to go with someone; I really dislike going alone (It’s a brain injury thing)! Adding last-minute time pressure to the crowds only increased my anxiety. Over the weekend, Kristy, Lisa & Dave took me shopping, & they were a tremendous help!
Kristy also offers to cook Christmas dinner for all of us.
Steven calls on Sunday to let us know that he & Kelly want to go with us to the 2nd opinion appointment Monday morning. Dave & Lisa say they will watch Parker.
The dominos are beginning to line up!
We look forward to Christmas, & we look forward to next week’s appointments, when we can get more questions answered. Getting treatment started as soon as possible is important to us, but I am very concerned about how my body will handle chemotherapy.
Several weeks earlier, we had decided that I would not teach in the spring semester. It was hard to agree to take the semester off, but I knew it was the right thing to do. It is foolish to think that I can teach while undergoing chemotherapy! We are also hoping chemotherapy will not increase the intensity of my migraines. Instead, we hope the reduced stress of not teaching will decrease the number & severity of my migraines. (At this point in time, it is a rare day that I awake without a migraine.) I think about the free time I will have between treatments as a gift from God. I prayed that the length of time I feel well will be long enough that I can complete some projects that I have put off because I did not have the time to do them while I was teaching. With a granddaughter on the way, I am hoping the timing of my treatments will be such that I will be able to go to Lisa’s, prior to her due date, & stay to help out for at least the 1st week after Cassidy’s birth. I am also hoping I will be able to spend some more time with my grandson, Parker. In addition to these things, I have special projects I want to complete for each of the kids that will create lasting memories. Giving up teaching to be sick doesn’t sound so great, but trading it to spend time with my family & doing special things for them is a really sweet trade-off! I just have to trust God to minimize the sick part so I can maximize the family part.
I have so much to be thankful for. Praise God for my wonderful family!
Ed arrived home before me, after my Thursday appointment, and wondered why I wasn’t home yet. He called my cell phone & found that I was almost home.
Since he knows me better than anyone else, he is expecting me to be very upset. He thinks I am “amazingly calm.” Again, I give the credit to God’s “peace that transcends understanding.” I'm not in denial; I know the facts, but I also know what God promised & that he does not lie. However, I readily welcome Ed’s reassuring embrace! I tell him that I am planning on being around for a long time, since God has told me that this is not a death sentence.
Ed & I go over the notes from the appointment. Jennifer did such a good job of taking notes & asking clarifying questions that I am able to use her notes to explain everything to him.
This diagnosis set up a domino effect. Several other things need to happen & happen very fast, if we are going to follow Dr. Patel’s new plan & begin chemotherapy the 1st week of January! We have so many things to take care of that it is a good thing that the semester has ended at the college!
We talk about the 2nd opinion appointment, at Geisinger. It needs to be rescheduled for an earlier date & with an oncologist, not a surgeon; so, I call the office of the surgeon. The nurse or receptionist who answers was very understanding & helpful. She calls oncology for me, makes the appointment, & calls me back within 15 minutes, with an appointment, with an oncologist, Monday Dec. 24th. She then tells me she will immediately forward all of the medical records she has already received & call the hospital that did my PET scan to ask to have it sent by FedEx to the oncologist. (Wow! Thank you God for having this woman answer my call!) Not long after that call, I receive another call, telling me I can pick up a CD & the written report of the PET scan, by noon Saturday, to take with us Monday. I can’t believe how quickly this all happens! Thank you God!
Although we are very comfortable in working with Dr. Patel, we have been urged, by numerous people, to get a 2nd opinion. We think it will be wise to heed their advice. We are only beginning to learn about cancer & available treatment options. The individuals most persistent about our seeking a 2nd opinion are those who work in the medical field, who have dealt with cancer or both.
We also need to put an appointment with Dr. Powers on our ASAP list. Dr. Powers is a full–time radiology oncologist; Wednesdays he runs the Powers Clinic to treat patients with alternative medicine – primarily nutrition & nutritional supplements, rather than additional drugs & chemicals. He is the doctor Dr. Pam told me could help me to strengthen my immune system & help me to tolerate chemotherapy better, without interfering with the effectiveness of my treatment. I am especially concerned about chemotherapy, because I have ulcerative colitis, which we are sure will be a complication, if I am to undergo chemotherapy.
Ed contacts his office. He is told that I need to fill out several medical history & information forms & sign consent forms so that Dr. Powers can access my medical records. Upon receiving my completed paperwork, it will be 3 weeks before his office will contact me to schedule an appointment at the Powers Clinic. If I am to start chemotherapy the 1st week of January, we need to get on this right away! The receptionist emails the forms to me so I can begin filling them out immediately. I can drop them off at the office Dec. 26th.
I remember making a remark to Ed about the fact that I am still baffled by the fact that I have gone every year for a mammogram & have taken care of myself so that I thought my risk of developing breast cancer was low. In the past few years, after the kids were on their own, I have become more lax about my diet & exercise, but the cancer did not develop in just the past few years. Growing up, I was always very active & ate a reasonably healthy diet. In 1981, I started learning about nutrition & supplements & made major changes to our family’s diet. I even taught aerobics & included some instruction on nutrition as a part of the class. Some would have called me a health nut.
When I had my yearly mammograms, as I waited for the x-ray technician, I read the check list on the wall & reassured myself that my risk for breast cancer is low. Now, here I am with stage IV metastasized breast cancer, & I never had a detectable breast lump or even a shadow on an x-ray. I just don’t understand it. It is even more amazing to think that this was silently going on inside my body for 8–10 years!
I have to stop this train of thought. I cannot do anything change my current diagnosis. Looking backwards is counterproductive. Looking forward is my only choice. I’m sure God has a plan & purpose in all of this. He could have stopped the cancer or revealed it sooner, but He’s chosen to allow it to continue, undetected, until now. I trust He will provide for my needs, as I travel this journey.
We, of course, talk about our mortality. After my auto accident, in 1999, I was very aware of the fact that every day is a gift! We know that no one is guaranteed tomorrow, & neither of us wants to live alone without the other.
We talk, in generalities, about “couples with one spouse who has a terminal disease.” This is a safe way to make sure we are on the same page in our thinking. It’s also a safe way to say, “What if I’m wrong about beating the cancer & living a long time; what would I want to do?” I know the possibility exists that I could be wrong, & I know that I do not know God’s definition of “long” life, for me specifically. I take it literally. I trust God, & I trust that He spoke to me in a way that I recognized His voice as His voice. I think if His meaning was different than the way I took it, He would adjust my thinking.
Ed & I had already talked about travelling more & have scheduled some vacations for the coming year. We briefly discuss a few more destinations we might schedule, which we have been putting off. I am hesitant to schedule any more vacations until I know the chemotherapy schedule. Because my cancer was now classified as stage IV, I was just guessing that I might have to go through more cycles than when we thought that I was either stage I or II & would have chemotherapy after surgery.
As we talk, I am so aware of just why I love Ed & why I married him. He is so thoughtful & caring. He is very sensitive & puts my needs & desires ahead of his own. Thank you God, for this wonderful man!
The kids are coming home for Christmas, but we can’t wait until they come home to tell them about this diagnosis. This is the most difficult round of calls to make & for them to get. I think they are more shocked, as we were, by the diagnosis of metastasized, stage IV breast cancer than by the original diagnosis of breast cancer. We answer as many of their questions as we can & invite them to go with us to the doctors’ appointments next week.
We are glad that we will be together, as a family, for a longer period of time, over Christmas. If they are unable to go with us, they can still contribute to our list of questions to ask when we meet with each of the doctors.
All of this is exhausting! We are so looking forward to relaxing & spending quality time with the kids!
Lisa & Dave came home Friday night & brought me a thoughtful gift book titled What Cancer Cannot Do. It is a small book packed with a ton of encouragement. It was written by a woman who has had 3 types of cancer & recurrences. It has 3 or 4, two-page readings under the following 10 headings:
Cancer is so limited it cannot: cripple God’s love; shatter hope; corrode faith; destroy peace; kill friendship; shut out memories; silence courage; invade the soul; steal eternal life; or conquer the spirit.
I picked it up & read it as often as I can, so that I finish it in 2 days. I think there should be several copies of it in every oncologist’s waiting room. (It’s also a good gift idea for anyone you know with cancer. If you have cancer buy one for yourself.)
With all that was going on over the past few months, I never went shopping on my own; therefore, I had not bought Ed any Christmas gifts. When the mall is really crowded I need to go with someone; I really dislike going alone (It’s a brain injury thing)! Adding last-minute time pressure to the crowds only increased my anxiety. Over the weekend, Kristy, Lisa & Dave took me shopping, & they were a tremendous help!
Kristy also offers to cook Christmas dinner for all of us.
Steven calls on Sunday to let us know that he & Kelly want to go with us to the 2nd opinion appointment Monday morning. Dave & Lisa say they will watch Parker.
The dominos are beginning to line up!
We look forward to Christmas, & we look forward to next week’s appointments, when we can get more questions answered. Getting treatment started as soon as possible is important to us, but I am very concerned about how my body will handle chemotherapy.
Several weeks earlier, we had decided that I would not teach in the spring semester. It was hard to agree to take the semester off, but I knew it was the right thing to do. It is foolish to think that I can teach while undergoing chemotherapy! We are also hoping chemotherapy will not increase the intensity of my migraines. Instead, we hope the reduced stress of not teaching will decrease the number & severity of my migraines. (At this point in time, it is a rare day that I awake without a migraine.) I think about the free time I will have between treatments as a gift from God. I prayed that the length of time I feel well will be long enough that I can complete some projects that I have put off because I did not have the time to do them while I was teaching. With a granddaughter on the way, I am hoping the timing of my treatments will be such that I will be able to go to Lisa’s, prior to her due date, & stay to help out for at least the 1st week after Cassidy’s birth. I am also hoping I will be able to spend some more time with my grandson, Parker. In addition to these things, I have special projects I want to complete for each of the kids that will create lasting memories. Giving up teaching to be sick doesn’t sound so great, but trading it to spend time with my family & doing special things for them is a really sweet trade-off! I just have to trust God to minimize the sick part so I can maximize the family part.
I have so much to be thankful for. Praise God for my wonderful family!
Ch 10 – Second Opinion
Original post 5/6/08
We meet Dr. Khalil, Mon. Dec. 24th. After introductions, relating some medical history, recounting the events that led to my diagnosis, & a physical exam, we learn more new information.
Dr. Khalil attempted to bring up my PET scan on the computer in the exam room but is unable to do so. He says he will have radiology bring it up later that day so he could look at it; the written report is so detailed that he is able to see the extent of the metastases of my cancer from this report. He starts by telling us that there is a “standard of care” for stage I and stage II cancer, but there is no “standard of care” for stage III or stage IV cancer.
We tell him Dr. Patel told me the mastectomy surgery, which had been scheduled for early January, is off. He recommends chemotherapy. I am scheduled to have a mediport inserted Thursday, so that I can begin chemotherapy the 1st week of January.
Dr. Khalil says there is no right or wrong approach; there are merely different approaches to treating stage III & stage IV cancer. With this in mind, we ask what he would recommend. He shares his recommendations but also tells us that they are subject to change based on a more comprehensive review of my medical records, since he did not have a chance to review them, in detail, prior to meeting with us.
To summarize, he says he would add the drug avastin to the chemotherapy. It is a newer drug, which some oncologists are not comfortable using because they do not think there is enough data to support its use. He is comfortable with the amount of data available & with the results he has seen, as he has used it with his patients. It is a target therapy drug; however, he is concerned over whether or not I am a good candidate for this therapy, given my history of ulcerative colitis & some possible side effects of the avastin. If a further review of my medical records shows I am a poor candidate for avastin, his 2nd recommendation is hormonal therapy, since my cancer is hormone receptor positive. We have never heard of this before; so, he briefly explains it to us. (Even though I had my ovaries removed, when I had a hysterectomy, & I stopped the HRT [hormone replacement therapy], my adrenal glands & fat tissue still produce some estrogen. My cancer is estrogen receptor positive, which means estrogen stimulates the growth of the cancer). A drug that lowers the production of estrogen is used. I ask how hormone therapy kills the cancer, & Dr. Khalil explains that it starves the cancer. That makes some sense. He goes on to say that if we lived in Europe this is where we would start, with therapy & use chemotherapy as the back-up, if & when the hormonal therapy failed; in the United States we start with chemotherapy & follow-up with hormonal therapy to prevent reoccurrence.
Steven asks Dr. Khalil what my chances of survival are. He does not want to answer this question, because the statistics encompass such a broad spectrum of cases, over a long span of time & include patients of a wide age span. However, Steven explains that he is very aware of the nature of statistics & presses him for an answer. After some give & take, Dr. Khalil concedes & says that “statistically,” I have about a 20% chance of surviving longer than 5 years. I see the color drain from Steven’s face, as he tries to hide his emotion. (Actually, I later read medical research articles about my type & stage of cancer & find that Dr. Khalil doubled the upper end number. In the research, the statistics are a survival rate of 5–10% after 5 years.)
Ed asks Dr. Khalil what I can do to increase my odds of living longer.
Throughout our time together, I notice that Dr. Khalil is very observant of our interactions between each other & with him. He is very friendly, & we feel very free to express our true thoughts & feelings. I think he creates a very comfortable atmosphere. We share with him that we are Christians & that we support one another as a family & that we have a strong support network both at work & within our church family. He tells us that he is also a Christian & explains that he can see that we are supportive of one another. He expresses how important a strong network of support is for a cancer patient. He also was impressed by my positive spirit & my ability to give him direct eye contact as I speak with him & answer his questions. He talks about what a great benefit this is for me, along with my faith. I tell him that I have more than a thousand people praying for me, & he tells me not to forget to pray for myself & to pray for my doctor to have wisdom to know how to treat my cancer.
I tell him that I did do this.
He says because we are Christians he will tell us a story. He asks if we know the story of Jesus raising Lazarus from the dead. We do. He says, “When Jesus arrived at Lazarus’ tomb he asked to have the stone taken away before he raised Lazarus, even though Jesus was able to move the stone. He didn’t need anyone to move the stone, but he asked the onlookers to participate in the miracle He was about to perform.” Dr. Khalil impresses upon us that Jesus sometimes asks us to participate in the work He is doing in our lives.
To this end, Dr. Khalil recommends that I do everything my doctors tell me to do.
He, also, recommends that I get regular exercise, such as walking 20 minutes every day.
Dr. Khalil tells us he will review my medical records, in more detail, & call me if he sees anything that changes his mind, with regard to his recommendations.
I ask him if he will call Dr. Patel & speak with him about his recommendations, & he assures me he will.
On our way out of the building, I can still see the deep concern on Steven’s face. Speaking the words aloud to him will be the reminder to me that I need. I tell him that God has told me this isn’t a death sentence, & God doesn’t lie. I plan on being around for Parker’s graduation from grade school, high school & college. I also plan on being around when he gets married.
Steven’s response is, “I hope so.” I certainly can understand this response. He has not had the personal encounters with God that I have had that have given me a “peace that transcends understanding.” Some things “rock the peaceful boat,” but it never overturns. Praise God! I hope & pray that God will give Steve a sense of His peace that I will survive for a long time.
I also reassure Steven by promising, “I will do anything the doctors tell me I need to do!”
We did learn a lot of new information to share with Dave & Lisa & with Kristy when we returned home.
Steven & Kelly left for home later in the afternoon.
Dave & Lisa have to leave as soon as we get home, for another family commitment; so, we do not get to fill them in on the details, of the appointment, until later that evening.
As I am telling Kristy about the appointment, I realize that she doesn’t quite realize the severity of stage IV cancer that has metastasized. I told her that Steven asked Dr. Khalil about my chances of survival & the give & take that took place, before he finally gave a percentage. I tell her that he said there is about a 20% chance I will survive more than 5 years, but I quickly add that God has told me this is not a death sentence. And God doesn’t lie. We both well up with tears & hug one another. I tell her I am going to make it, & she said she knows I will.
This is one of the hardest times as a parent – helping my children trust God when the situation looks hopeless to them, when my “peaceful boat of hope is rocking in some turbulence.” We learn difficult facts – we want our children to know the facts, but we don’t want them to live in fear. God’s given me peace & hope for the future; I want my children to experience it too. I can’t give them peace, but I can offer them hope. I want to hold out God’s hope in the situation; I pray they will grab onto it tightly & never let go of it. As they hold onto hope, I pray they will also begin to experience God’s peace.
Going to the Christmas Eve service with Ed, Dave, Lisa & Kristy is enjoyable & a much needed distraction, even though I remember having to force myself to go. (I guess I was on emotional overload.)
Upon returning home, we see the message light flashing on our phone. When Ed checks it, he finds that Dr. Khalil called right after we left for church. He looked over my records after his appointments were over & noticed something he wants to talk to me about. He says he will call me back first thing Wednesday morning, since he knows I have an appointment with Dr. Patel Friday afternoon. Of course, we wonder, what was he going to tell us?
When we have the opportunity to talk with Dave & Lisa about the appointment, Lisa wants to know more about hormone therapy. She does an internet search. This helps us to learn more information & to formulate questions for our appointment with Dr. Patel. There are 2 types of hormone treatment, but we need some further clarification. As Dr. Khalil explained, hormone therapy can be used after chemotherapy, to prevent reoccurrence, or it can be used 1st, & chemotherapy is saved as a back-up, to be used if & when hormone therapy fails. She also looks up information on ulcerative colitis & colon cancer to see how it is treated. Is it treated with chemotherapy? We wonder, is my immune system able to withstand chemotherapy? We come up with several other questions. This research & questioning is really good preparation for the Friday appointment.
Early Wednesday morning, Dec. 26th, Dr. Khalil calls to tell me that in reviewing my medical records, in more detail, it is apparent that my ulcerative colitis is worse than he thought it was. I am not a candidate for avastin. In fact, I am not a good candidate for chemotherapy, due to the extent of my ulcerative colitis. This makes my immune system too vulnerable; I would probably not be able to tolerate chemotherapy. In his opinion, I am a much better candidate for hormonal therapy.
I thank him for everything he has done & ask if he has called Dr. Patel or if he is going to call him. He says he is going to call him right after he hangs up from talking with me.
We take the completed pile of medical history, medical release forms & miscellaneous paperwork to Dr. Powers’ office & drop it off that morning.
Next, Ed & I are off to see Dr. Patel, on Friday afternoon. Dave & Lisa are going along on this visit. We have many more questions we want to have answered. Is there even more we can learn? Which form of treatment will I have? Dave & Lisa are praying with us for Dr. Patel to have God’s wisdom to know what is best for me.
We meet Dr. Khalil, Mon. Dec. 24th. After introductions, relating some medical history, recounting the events that led to my diagnosis, & a physical exam, we learn more new information.
Dr. Khalil attempted to bring up my PET scan on the computer in the exam room but is unable to do so. He says he will have radiology bring it up later that day so he could look at it; the written report is so detailed that he is able to see the extent of the metastases of my cancer from this report. He starts by telling us that there is a “standard of care” for stage I and stage II cancer, but there is no “standard of care” for stage III or stage IV cancer.
We tell him Dr. Patel told me the mastectomy surgery, which had been scheduled for early January, is off. He recommends chemotherapy. I am scheduled to have a mediport inserted Thursday, so that I can begin chemotherapy the 1st week of January.
Dr. Khalil says there is no right or wrong approach; there are merely different approaches to treating stage III & stage IV cancer. With this in mind, we ask what he would recommend. He shares his recommendations but also tells us that they are subject to change based on a more comprehensive review of my medical records, since he did not have a chance to review them, in detail, prior to meeting with us.
To summarize, he says he would add the drug avastin to the chemotherapy. It is a newer drug, which some oncologists are not comfortable using because they do not think there is enough data to support its use. He is comfortable with the amount of data available & with the results he has seen, as he has used it with his patients. It is a target therapy drug; however, he is concerned over whether or not I am a good candidate for this therapy, given my history of ulcerative colitis & some possible side effects of the avastin. If a further review of my medical records shows I am a poor candidate for avastin, his 2nd recommendation is hormonal therapy, since my cancer is hormone receptor positive. We have never heard of this before; so, he briefly explains it to us. (Even though I had my ovaries removed, when I had a hysterectomy, & I stopped the HRT [hormone replacement therapy], my adrenal glands & fat tissue still produce some estrogen. My cancer is estrogen receptor positive, which means estrogen stimulates the growth of the cancer). A drug that lowers the production of estrogen is used. I ask how hormone therapy kills the cancer, & Dr. Khalil explains that it starves the cancer. That makes some sense. He goes on to say that if we lived in Europe this is where we would start, with therapy & use chemotherapy as the back-up, if & when the hormonal therapy failed; in the United States we start with chemotherapy & follow-up with hormonal therapy to prevent reoccurrence.
Steven asks Dr. Khalil what my chances of survival are. He does not want to answer this question, because the statistics encompass such a broad spectrum of cases, over a long span of time & include patients of a wide age span. However, Steven explains that he is very aware of the nature of statistics & presses him for an answer. After some give & take, Dr. Khalil concedes & says that “statistically,” I have about a 20% chance of surviving longer than 5 years. I see the color drain from Steven’s face, as he tries to hide his emotion. (Actually, I later read medical research articles about my type & stage of cancer & find that Dr. Khalil doubled the upper end number. In the research, the statistics are a survival rate of 5–10% after 5 years.)
Ed asks Dr. Khalil what I can do to increase my odds of living longer.
Throughout our time together, I notice that Dr. Khalil is very observant of our interactions between each other & with him. He is very friendly, & we feel very free to express our true thoughts & feelings. I think he creates a very comfortable atmosphere. We share with him that we are Christians & that we support one another as a family & that we have a strong support network both at work & within our church family. He tells us that he is also a Christian & explains that he can see that we are supportive of one another. He expresses how important a strong network of support is for a cancer patient. He also was impressed by my positive spirit & my ability to give him direct eye contact as I speak with him & answer his questions. He talks about what a great benefit this is for me, along with my faith. I tell him that I have more than a thousand people praying for me, & he tells me not to forget to pray for myself & to pray for my doctor to have wisdom to know how to treat my cancer.
I tell him that I did do this.
He says because we are Christians he will tell us a story. He asks if we know the story of Jesus raising Lazarus from the dead. We do. He says, “When Jesus arrived at Lazarus’ tomb he asked to have the stone taken away before he raised Lazarus, even though Jesus was able to move the stone. He didn’t need anyone to move the stone, but he asked the onlookers to participate in the miracle He was about to perform.” Dr. Khalil impresses upon us that Jesus sometimes asks us to participate in the work He is doing in our lives.
To this end, Dr. Khalil recommends that I do everything my doctors tell me to do.
He, also, recommends that I get regular exercise, such as walking 20 minutes every day.
Dr. Khalil tells us he will review my medical records, in more detail, & call me if he sees anything that changes his mind, with regard to his recommendations.
I ask him if he will call Dr. Patel & speak with him about his recommendations, & he assures me he will.
On our way out of the building, I can still see the deep concern on Steven’s face. Speaking the words aloud to him will be the reminder to me that I need. I tell him that God has told me this isn’t a death sentence, & God doesn’t lie. I plan on being around for Parker’s graduation from grade school, high school & college. I also plan on being around when he gets married.
Steven’s response is, “I hope so.” I certainly can understand this response. He has not had the personal encounters with God that I have had that have given me a “peace that transcends understanding.” Some things “rock the peaceful boat,” but it never overturns. Praise God! I hope & pray that God will give Steve a sense of His peace that I will survive for a long time.
I also reassure Steven by promising, “I will do anything the doctors tell me I need to do!”
We did learn a lot of new information to share with Dave & Lisa & with Kristy when we returned home.
Steven & Kelly left for home later in the afternoon.
Dave & Lisa have to leave as soon as we get home, for another family commitment; so, we do not get to fill them in on the details, of the appointment, until later that evening.
As I am telling Kristy about the appointment, I realize that she doesn’t quite realize the severity of stage IV cancer that has metastasized. I told her that Steven asked Dr. Khalil about my chances of survival & the give & take that took place, before he finally gave a percentage. I tell her that he said there is about a 20% chance I will survive more than 5 years, but I quickly add that God has told me this is not a death sentence. And God doesn’t lie. We both well up with tears & hug one another. I tell her I am going to make it, & she said she knows I will.
This is one of the hardest times as a parent – helping my children trust God when the situation looks hopeless to them, when my “peaceful boat of hope is rocking in some turbulence.” We learn difficult facts – we want our children to know the facts, but we don’t want them to live in fear. God’s given me peace & hope for the future; I want my children to experience it too. I can’t give them peace, but I can offer them hope. I want to hold out God’s hope in the situation; I pray they will grab onto it tightly & never let go of it. As they hold onto hope, I pray they will also begin to experience God’s peace.
Going to the Christmas Eve service with Ed, Dave, Lisa & Kristy is enjoyable & a much needed distraction, even though I remember having to force myself to go. (I guess I was on emotional overload.)
Upon returning home, we see the message light flashing on our phone. When Ed checks it, he finds that Dr. Khalil called right after we left for church. He looked over my records after his appointments were over & noticed something he wants to talk to me about. He says he will call me back first thing Wednesday morning, since he knows I have an appointment with Dr. Patel Friday afternoon. Of course, we wonder, what was he going to tell us?
When we have the opportunity to talk with Dave & Lisa about the appointment, Lisa wants to know more about hormone therapy. She does an internet search. This helps us to learn more information & to formulate questions for our appointment with Dr. Patel. There are 2 types of hormone treatment, but we need some further clarification. As Dr. Khalil explained, hormone therapy can be used after chemotherapy, to prevent reoccurrence, or it can be used 1st, & chemotherapy is saved as a back-up, to be used if & when hormone therapy fails. She also looks up information on ulcerative colitis & colon cancer to see how it is treated. Is it treated with chemotherapy? We wonder, is my immune system able to withstand chemotherapy? We come up with several other questions. This research & questioning is really good preparation for the Friday appointment.
Early Wednesday morning, Dec. 26th, Dr. Khalil calls to tell me that in reviewing my medical records, in more detail, it is apparent that my ulcerative colitis is worse than he thought it was. I am not a candidate for avastin. In fact, I am not a good candidate for chemotherapy, due to the extent of my ulcerative colitis. This makes my immune system too vulnerable; I would probably not be able to tolerate chemotherapy. In his opinion, I am a much better candidate for hormonal therapy.
I thank him for everything he has done & ask if he has called Dr. Patel or if he is going to call him. He says he is going to call him right after he hangs up from talking with me.
We take the completed pile of medical history, medical release forms & miscellaneous paperwork to Dr. Powers’ office & drop it off that morning.
Next, Ed & I are off to see Dr. Patel, on Friday afternoon. Dave & Lisa are going along on this visit. We have many more questions we want to have answered. Is there even more we can learn? Which form of treatment will I have? Dave & Lisa are praying with us for Dr. Patel to have God’s wisdom to know what is best for me.
Ch 11 – The Big Decision
Original post 5/12/08
December 26th we dropped off the pile of paperwork I filled out for Dr. Powers, at his office.
As we headed for my appointment with Dr. Patel December 28th, we didn’t know we had a BIG DECISION to make.
Dave & Lisa are going with us to meet with Dr. Patel. The 4 of us are praying that God will give Dr. Patel the wisdom to choose the form of treatment that is right for me. We are prepared for the appointment, with a list of questions.
I introduce Dr. Patel to Dave & Lisa. Then I ask if Dr. Khalil called; he had. We are very anxious to hear about their conversation. Dr. Patel tells us that at the beginning of the conversation Dr. Khalil explained his recommendation of hormonal therapy & his reason for making it was his concern over my compromised immune system, which he did not think would handle chemotherapy, due to my ulcerative colitis. From his description, I would say, Dr. Patel listened respectfully before he responded. He can see his point; however, he explains his reason for advising me to go the route of chemotherapy is based upon the metastases to a vital organ – the lungs. Dr. Patel says they spoke at some length, & by the end of the conversation, they switched positions so that each was arguing for the position opposite of the one he held at the beginning of the call. This makes us think back to what Dr. Khalil told us Monday. Dr. Patel repeats the same statement. “There is no standard of care for stage III or stage IV cancer.”
Dr. Khalil also told us there is not a right or wrong approach, just different approaches to treatment. We are glad we prayed for God to give Dr. Patel wisdom to choose the right treatment. He then tells us the pros & cons of the 2 options, which I will try to summarize.
Chemotherapy of 8 cycles, with a PET scan every 6 weeks, to monitor the progress of the chemotherapy. This means 6 months of chemotherapy. If we go with chemotherapy, it can make a big difference, very quickly, in terms of killing the cancer, but it also has many nasty side effects. I lose my hair, which is usually most traumatic for females. I get sick with each treatment, but there are drugs to control the illness. Blood cell counts are checked prior to administering each chemotherapy treatment. If my white blood cell count drops too low, treatment is delayed, this extends the total treatment time. In addition, there is a lifetime limit of both chemotherapy drugs & radiation treatments that can be administered. When I reach my limits, no more can be given.
I tell Dr. Patel I am not worried about losing my hair. I’ve already talked with my stylist about shaving my hair off when it starts to fall out & getting a good quality wig, while I can match it to my hair. I already voluntarily had my hair shaved off, after my auto accident, in 1999. Due to lacerations to my head that required stitches & surgery to reconstruct the bones in my face, which required an incision that was within an inch of ear to ear, across the top of my head, the doctors had chopped off so many chunks of hair that it was better to have the stylist shave it all off than to have her shave off the front half & live with a mullet for the next year & a half. My major concern is how sick I may get from the chemotherapy. I am so concerned; I wonder if it can nearly take my life. Dr. Khalil’s concern reinforced my anxiety. Dr. Patel tells us that he has had chemotherapy patients who have ulcerative colitis, but he cannot tell us the severity of the disease, in any of these cases.
Hormone, or endocrine therapy, as it is also known, requires that I take a pill every day. A PET scan will be done in 6 weeks as a baseline scan & every 3 months afterward, to monitor progress. The baseline scan is not expected to show any improvement over the PET scan completed in early December. In fact, it may be the same or even a little worse. If we use a hormone blocker or an AI (aromatase inhibitor), it will take longer to see results, but it won’t have the side effects of chemotherapy. Dr. Patel warns us that it takes 1 month for the AI to be effective, then it usually takes at least 3 months to see any improvement on the PET scan. He informs us that the side effects are the same as menopause – hot flashes, joint pain, possible personality changes, possibly depression, 10% weight gain, & osteoporosis. Dr. Patel clarifies for us that personality changes will not be major changes. (That’s a relief! I put Ed through enough to adjust to my personality changes resulting from the brain injury sustained in the auto accident, in 1999; I couldn’t bear the thought of putting him through that again. I just praise God for a wonderful husband who loves me despite the fact that I am not exactly the same woman he married.) Dr. Patel indicates that, with this option, we will still have our “ace in the hole” (chemotherapy) or the “big guns” (chemotherapy & radiation), if we need them, in the future. He uses both terms, in the course of our conversation.
As Dr. Patel is talking I am thinking. We had our hearts set on getting results quickly, but the side effects of the hormone therapy cause me less concern than those associated with chemotherapy. I am already dealing with hot flashes, due to stopping the HRT; however, Dr. Patel says they will get worse. I am already at least 10 pounds overweight, & I don’t look forward to further weight gain. Dr. Patel tells me that I am not to go on a diet to lose weight; it is too important that I eat a well-balanced diet to keep my immune system as healthy as possible. If this is the route he recommends, it will take some time for me to mentally adjust to the idea of accepting myself weighing 10% more. God knows how my brain is wired. He will have to help me with this one. Perhaps there is a solution. I’m not prone to depression; I can trust God to help me with this, if it should happen. I take a good quality multivitamin & calcium supplement that I trust will help to protect my bones against osteoporosis.
Ed, Lisa & I ask our questions, during Dr. Patel’s descriptions of the 2 options, to get additional information, as needed. Dr. Patel is very thorough when he describes complicated processes; we are amazed at how easy he makes it to understand them. He explains that the hormone therapy he is referring to is called an AI (aromatase inhibitor). It inhibits my body’s ability to produce estrogen.
At one point, I brought up the fact that my mastectomy surgery was canceled & wonder if it will be rescheduled for a later date, after some treatment has taken place.
He states that I can only have surgery if it is possible to remove all of the cancer. My cancer is too advanced for that to be possible. Having any major surgery would be, to any cancer cells not removed, like pouring gasoline on a fire; it would cause those cancer cells to multiply & spread much more quickly! I was wrong about why surgery causes cancer to rapidly multiply & spread. Dr. Patel addresses this by telling us that most people think the exposure of the cancer cells to oxygen causes this rapid growth. Actually, when the body recovers from surgery it produces chemicals that stimulate the natural healing process, but these same chemicals stimulate the rate of growth of cancer cells.
After telling us about his conversation with Dr, Khalil, the details of both forms of treatment & answering our questions, Dr. Patel explains that my opinion of & attitude toward the form of treatment chosen is crucial to its success. He says if I don’t think chemotherapy or hormone therapy will work, it won’t work. Then he turns to me & asks me which one is my choice. It is really scary to unexpectedly have that much responsibility dropped in my lap! I quickly look at Ed & Lisa & then back at Dr. Patel; I see the same look on their faces as I think is on mine – a big fat question mark. I tell Dr. Patel that we prayed for God to give him the wisdom to choose the treatment that is right for me. Ed & Lisa agree. I did tell him that it is especially hard for me, due to the brain injury, to be put on the spot to answer such a question. I need more time to process what I just heard before I could react with a decision.
Ed asks Dr. Patel what he thinks we should do. He is very evasive.
Dr. Patel explains that he knows we take an active role in educating ourselves about the various aspects of what I am facing; so, he knows we are capable of making the decision. He points out that he is impressed by our supportive family, which he often does not see. Every appointment I bring at least one family member with me, & I always bring a list of questions.
At some point, Lisa asks him what my chances are. He is hesitant to answer but does respond with, “Your mom has a very good chance of living more than 5 years.” He has known me longer & knows me a little better than Dr. Khalil, but I think his positive response is interesting. Dr. Patel has a positive outlook, & I believe he will do everything he knows to do to help me live as long as possible. However, I don’t think he is the kind of person to give false hope either. He is aware of my faith & has heard me state that God told me that this is not a death sentence. Perhaps this is also confirmation that he believes what I have said is true.
Ed finally asks Dr. Patel what he would do if it were his wife or mother, to try to pin him down for a recommendation. After he & Ed go back & forth for some time, Dr. Patel finally says he would choose the hormone therapy.
As I sit there listening, it gives me time to process everything & to pray, so I can feel comfortable making a decision. I realize that Dr. Patel told us his decision when he told us about his phone call with Dr. Khalil. He is now confirming it.
Dr. Patel asks me again if I am able to make a decision or if I want to go home & let him know later what I want to do. I tell him, “I want to go with the hormone therapy.” I look at Ed, & he nods in agreement. I look at Lisa, & she nods in agreement. Dr. Patel asks if we are sure. We look at each other again, & say we are sure. None of us feels any hesitation. It feels right. There is no unrest. I am not nervous. Dr. Patel seems a bit surprised by our sudden ability to be so sure about our decision. He reminds us that it will take longer to see results with hormone therapy. In fact, he reminds us that the first baseline PET scan may even be a little worse than the one in early December. It takes a full month for the AI to be effective in inhibiting the production of estrogen, & I will only be on the AI for 6 weeks when I have the PET scan in February. There usually isn’t any noticeable improvement on a PET scan until an individual is on an AI for 3 months.
We acknowledge that we are aware of these facts, but we are still comfortable with moving in this direction.
After the fact, we realize another reason why Dr. Patel asks us to make THE BIG DECISION. He knew we were in a hurry to get to treatment & to get results quickly. If he made the decision & told us he was recommending hormone therapy, which was going to take one month to begin to work & then another 3 months to show a noticeable difference, he ran the risk of upsetting us due to a further delay. By involving us in the decision-making, he gains our full support. Because we take an active role in educating ourselves, he knows we can analyze the situation. One thing Dr. Patel didn’t count on was our reliance on God’s peace to guide us, & God’s peace was unmistakably present!
Because we have such peace about this choice, we believe it is God’s choice to go with the hormone therapy. Thank you God for your peace that transcends all understanding!
December 26th we dropped off the pile of paperwork I filled out for Dr. Powers, at his office.
As we headed for my appointment with Dr. Patel December 28th, we didn’t know we had a BIG DECISION to make.
Dave & Lisa are going with us to meet with Dr. Patel. The 4 of us are praying that God will give Dr. Patel the wisdom to choose the form of treatment that is right for me. We are prepared for the appointment, with a list of questions.
I introduce Dr. Patel to Dave & Lisa. Then I ask if Dr. Khalil called; he had. We are very anxious to hear about their conversation. Dr. Patel tells us that at the beginning of the conversation Dr. Khalil explained his recommendation of hormonal therapy & his reason for making it was his concern over my compromised immune system, which he did not think would handle chemotherapy, due to my ulcerative colitis. From his description, I would say, Dr. Patel listened respectfully before he responded. He can see his point; however, he explains his reason for advising me to go the route of chemotherapy is based upon the metastases to a vital organ – the lungs. Dr. Patel says they spoke at some length, & by the end of the conversation, they switched positions so that each was arguing for the position opposite of the one he held at the beginning of the call. This makes us think back to what Dr. Khalil told us Monday. Dr. Patel repeats the same statement. “There is no standard of care for stage III or stage IV cancer.”
Dr. Khalil also told us there is not a right or wrong approach, just different approaches to treatment. We are glad we prayed for God to give Dr. Patel wisdom to choose the right treatment. He then tells us the pros & cons of the 2 options, which I will try to summarize.
Chemotherapy of 8 cycles, with a PET scan every 6 weeks, to monitor the progress of the chemotherapy. This means 6 months of chemotherapy. If we go with chemotherapy, it can make a big difference, very quickly, in terms of killing the cancer, but it also has many nasty side effects. I lose my hair, which is usually most traumatic for females. I get sick with each treatment, but there are drugs to control the illness. Blood cell counts are checked prior to administering each chemotherapy treatment. If my white blood cell count drops too low, treatment is delayed, this extends the total treatment time. In addition, there is a lifetime limit of both chemotherapy drugs & radiation treatments that can be administered. When I reach my limits, no more can be given.
I tell Dr. Patel I am not worried about losing my hair. I’ve already talked with my stylist about shaving my hair off when it starts to fall out & getting a good quality wig, while I can match it to my hair. I already voluntarily had my hair shaved off, after my auto accident, in 1999. Due to lacerations to my head that required stitches & surgery to reconstruct the bones in my face, which required an incision that was within an inch of ear to ear, across the top of my head, the doctors had chopped off so many chunks of hair that it was better to have the stylist shave it all off than to have her shave off the front half & live with a mullet for the next year & a half. My major concern is how sick I may get from the chemotherapy. I am so concerned; I wonder if it can nearly take my life. Dr. Khalil’s concern reinforced my anxiety. Dr. Patel tells us that he has had chemotherapy patients who have ulcerative colitis, but he cannot tell us the severity of the disease, in any of these cases.
Hormone, or endocrine therapy, as it is also known, requires that I take a pill every day. A PET scan will be done in 6 weeks as a baseline scan & every 3 months afterward, to monitor progress. The baseline scan is not expected to show any improvement over the PET scan completed in early December. In fact, it may be the same or even a little worse. If we use a hormone blocker or an AI (aromatase inhibitor), it will take longer to see results, but it won’t have the side effects of chemotherapy. Dr. Patel warns us that it takes 1 month for the AI to be effective, then it usually takes at least 3 months to see any improvement on the PET scan. He informs us that the side effects are the same as menopause – hot flashes, joint pain, possible personality changes, possibly depression, 10% weight gain, & osteoporosis. Dr. Patel clarifies for us that personality changes will not be major changes. (That’s a relief! I put Ed through enough to adjust to my personality changes resulting from the brain injury sustained in the auto accident, in 1999; I couldn’t bear the thought of putting him through that again. I just praise God for a wonderful husband who loves me despite the fact that I am not exactly the same woman he married.) Dr. Patel indicates that, with this option, we will still have our “ace in the hole” (chemotherapy) or the “big guns” (chemotherapy & radiation), if we need them, in the future. He uses both terms, in the course of our conversation.
As Dr. Patel is talking I am thinking. We had our hearts set on getting results quickly, but the side effects of the hormone therapy cause me less concern than those associated with chemotherapy. I am already dealing with hot flashes, due to stopping the HRT; however, Dr. Patel says they will get worse. I am already at least 10 pounds overweight, & I don’t look forward to further weight gain. Dr. Patel tells me that I am not to go on a diet to lose weight; it is too important that I eat a well-balanced diet to keep my immune system as healthy as possible. If this is the route he recommends, it will take some time for me to mentally adjust to the idea of accepting myself weighing 10% more. God knows how my brain is wired. He will have to help me with this one. Perhaps there is a solution. I’m not prone to depression; I can trust God to help me with this, if it should happen. I take a good quality multivitamin & calcium supplement that I trust will help to protect my bones against osteoporosis.
Ed, Lisa & I ask our questions, during Dr. Patel’s descriptions of the 2 options, to get additional information, as needed. Dr. Patel is very thorough when he describes complicated processes; we are amazed at how easy he makes it to understand them. He explains that the hormone therapy he is referring to is called an AI (aromatase inhibitor). It inhibits my body’s ability to produce estrogen.
At one point, I brought up the fact that my mastectomy surgery was canceled & wonder if it will be rescheduled for a later date, after some treatment has taken place.
He states that I can only have surgery if it is possible to remove all of the cancer. My cancer is too advanced for that to be possible. Having any major surgery would be, to any cancer cells not removed, like pouring gasoline on a fire; it would cause those cancer cells to multiply & spread much more quickly! I was wrong about why surgery causes cancer to rapidly multiply & spread. Dr. Patel addresses this by telling us that most people think the exposure of the cancer cells to oxygen causes this rapid growth. Actually, when the body recovers from surgery it produces chemicals that stimulate the natural healing process, but these same chemicals stimulate the rate of growth of cancer cells.
After telling us about his conversation with Dr, Khalil, the details of both forms of treatment & answering our questions, Dr. Patel explains that my opinion of & attitude toward the form of treatment chosen is crucial to its success. He says if I don’t think chemotherapy or hormone therapy will work, it won’t work. Then he turns to me & asks me which one is my choice. It is really scary to unexpectedly have that much responsibility dropped in my lap! I quickly look at Ed & Lisa & then back at Dr. Patel; I see the same look on their faces as I think is on mine – a big fat question mark. I tell Dr. Patel that we prayed for God to give him the wisdom to choose the treatment that is right for me. Ed & Lisa agree. I did tell him that it is especially hard for me, due to the brain injury, to be put on the spot to answer such a question. I need more time to process what I just heard before I could react with a decision.
Ed asks Dr. Patel what he thinks we should do. He is very evasive.
Dr. Patel explains that he knows we take an active role in educating ourselves about the various aspects of what I am facing; so, he knows we are capable of making the decision. He points out that he is impressed by our supportive family, which he often does not see. Every appointment I bring at least one family member with me, & I always bring a list of questions.
At some point, Lisa asks him what my chances are. He is hesitant to answer but does respond with, “Your mom has a very good chance of living more than 5 years.” He has known me longer & knows me a little better than Dr. Khalil, but I think his positive response is interesting. Dr. Patel has a positive outlook, & I believe he will do everything he knows to do to help me live as long as possible. However, I don’t think he is the kind of person to give false hope either. He is aware of my faith & has heard me state that God told me that this is not a death sentence. Perhaps this is also confirmation that he believes what I have said is true.
Ed finally asks Dr. Patel what he would do if it were his wife or mother, to try to pin him down for a recommendation. After he & Ed go back & forth for some time, Dr. Patel finally says he would choose the hormone therapy.
As I sit there listening, it gives me time to process everything & to pray, so I can feel comfortable making a decision. I realize that Dr. Patel told us his decision when he told us about his phone call with Dr. Khalil. He is now confirming it.
Dr. Patel asks me again if I am able to make a decision or if I want to go home & let him know later what I want to do. I tell him, “I want to go with the hormone therapy.” I look at Ed, & he nods in agreement. I look at Lisa, & she nods in agreement. Dr. Patel asks if we are sure. We look at each other again, & say we are sure. None of us feels any hesitation. It feels right. There is no unrest. I am not nervous. Dr. Patel seems a bit surprised by our sudden ability to be so sure about our decision. He reminds us that it will take longer to see results with hormone therapy. In fact, he reminds us that the first baseline PET scan may even be a little worse than the one in early December. It takes a full month for the AI to be effective in inhibiting the production of estrogen, & I will only be on the AI for 6 weeks when I have the PET scan in February. There usually isn’t any noticeable improvement on a PET scan until an individual is on an AI for 3 months.
We acknowledge that we are aware of these facts, but we are still comfortable with moving in this direction.
After the fact, we realize another reason why Dr. Patel asks us to make THE BIG DECISION. He knew we were in a hurry to get to treatment & to get results quickly. If he made the decision & told us he was recommending hormone therapy, which was going to take one month to begin to work & then another 3 months to show a noticeable difference, he ran the risk of upsetting us due to a further delay. By involving us in the decision-making, he gains our full support. Because we take an active role in educating ourselves, he knows we can analyze the situation. One thing Dr. Patel didn’t count on was our reliance on God’s peace to guide us, & God’s peace was unmistakably present!
Because we have such peace about this choice, we believe it is God’s choice to go with the hormone therapy. Thank you God for your peace that transcends all understanding!
Ch 12 – Migraine Control & Support Treatment
Original post 5/20/08
Our big decision concerning treatment is made. It actually seems too easy. After all of my anxiety over treatment, it all comes down to taking a tiny pill each day. No surgery. I did not want to have a mastectomy, but I was prepared to do so to save my life. No chemotherapy. I was really scared about how sick I would get. Why did I stress over these things? I know God is in control. He had all the bases covered before I even knew the extent of my disease. (I was not worried about having help; so many people offered to help us, I knew any one of them would be there in a heartbeat to help in any way we expressed we needed help.)
I had no idea there are treatment options besides surgery, chemotherapy & radiation. I learn that there are other alternatives I never would have considered to be forms of treatment for cancer.
I am, for the next week & a half, preoccupied with my migraine headaches that are daily increasing in intensity. By the weekend of Jan. 5th, I have awoken only 3 mornings, in 6 weeks, without a migraine. It is so frustrating to go through my prescriptions & my “bag of tricks” to manage the migraines & still have my head throbbing. It definitely affects my disposition negatively, as I attempt to keep going about my daily activities. It’s really hard to maintain a positive attitude & to try to be pleasant to everyone around me. I can’t take it any longer.
Saturday evening, I ask Ed to take me to the ER for pain shots, to kill that day’s migraine. As I am waiting to be seen by a doctor, I am in tears from the pain. From past experience, I know pain shots will finally break the cycle of pain I am experiencing. After 3 injections, the pain is under control & I am sent home to sleep it off.
With the cycle of pain broken, I awake the next morning without a migraine. Thank you God! I make an appointment with Dr. Pam to discuss this problem; so, I will not repeat this cycle. In November, she had prescribed a new medication to take when I got a migraine. 1990 – 91 I tried medications to prevent migraines but found they were ineffective, caused unacceptable side effects, or caused an allergic reaction. Dr. Pam tells me about a newer medication that is now available. The drawback is the fact that she cannot determine the dosage that will work for me. She can give me a starting dosage. Once each week I will increase the dosage, until I find the dosage that is effective in preventing my migraines. I’m willing to try it.
We talk to Dr. Pam to bring her up to date on my PET scan, final diagnosis, 2nd opinion appointment, & choice of treatment. We ask her opinion of our choice to go with hormone therapy. She explains that this is not her area of expertise, but she will do some research on the current, most common practices & pass along her findings to us.
Ed is back for an appointment a couple of weeks later, & Dr. Pam hands him a stack of current research, most of which pertains to treatment of stage IV invasive ductile carcinoma, positive for hormone receptors. It is obvious she narrowed the research to my exact diagnosis. How many doctors do this? While Ed is there, he tells her I am not feeling well & describes my symptoms. She does not like what she hears. She says her office hours are over at 2:30, & he should bring me back at that time. Dr. Pam is a gem!
Ed stops at home before going back to work. He gives me the research & tells me to be ready to go to see her at 2:30.
I read through the research & find that every article recommends hormone therapy over chemotherapy. Thank you, God, for the medical confirmation of our choice.
Dr. Pam is not surprised when I tell her I read all the research she sent home that morning. She agrees that we made the right choice to go with hormone therapy. This adds to our comfort level with our decision.
Steven had encouraged us to look into clinical trials; so, we asked Dr. Pam if she can help us find clinical trials. It’s already after office hours, but she tells us to go pick up my new prescriptions & come back. She will look up clinical trials, within driving distance, & print them for us. She tells Ed to just knock on the outer office door, when we come back. What doctor does this? We tell her she does not have to do this right away, but she says she is going to be there to catch up on paper work anyway.
Over the next few weeks, I do not have any negative reaction to the new medication to, hopefully, prevent my migraines. They continue, but they are not daily or as severe. This is a welcome relief! They are slowly improving, but I still do not feel they are under control.
Friends had asked us to join them in Florida, for a week or a long weekend, during the 6 weeks they will be staying in Boynton Beach. I told Ed I would like to go, but I cannot make the commitment to buy airline tickets unless my migraines are under control. If I go, I want to enjoy myself, & I don’t want to spoil everyone else’s good time because I have nasty migraines.
January 30th, we have an appointment with Dr. Powers to discuss treatment to strengthen my immune system. We don’t know what to expect. Can he help my ulcerative colitis? Can he help my migraines headaches? We don’t know. How will he strengthen my immune system?
We give Dr. Powers a copy of the PET scan report, which he does not have. I had stated, in a questionnaire I returned to his office Dec. 26th, that my diagnosis is stage IV metastatic breast cancer, but this is the proof. Dr. Powers agrees with our decision to go with hormone therapy. He says my immune system is so compromised, due to my ulcerative colitis, that I cannot handle chemotherapy. In fact, he implies it could cost me my life! He uses much stronger language than Dr. Khalil. This is further confirmation that we made the right decision.
He orders some additional lab tests, recommends taking double my daily, multiple vitamins, 3 other supplements, & he puts me on a very strict low amylose diet.
One supplement he recommends is vitamin C. He says to start with 1,000mg & gradually increase to 4,000mg per day. I, respectfully, tell him that I cannot take supplemental vitamin C, due to my ulcerative colitis; it will cause a flare-up. I know from my reading & from experience.
He suggests that I use Ester C. He went on to explain the role vitamin C can play in killing cancer cells, which sounds wonderful. I am thinking, “I wish I could take extra vitamin C.”
Again, I tell him, respectfully, that I have used Ester C & found that it also causes flare-ups, but I will try it. I want it to work, but I know my past experiences.
I am trying to follow what Dr. Powers is telling us, based on my previous study of nutrition, but he is talking about some information that is foreign to me. I ask some questions. I hope Ed is taking good notes. When I look at the diet sheet, I am shocked! I think, “You’ve got to be kidding!” My impression is that the purpose of this diet is mainly to manage my ulcerative colitis. I cannot eat any grains – no wheat, oats, rye or rice. No root vegetables except onions & garlic. Raw carrots are OK but not cooked. Fruits are OK, except bananas & citrus. Nuts & seeds are OK, except NO peanuts & NO peanut butter. No sugar in any form. No additives that I cannot pronounce.
I’m in a panic! My negative emotions are screaming so loudly that I can’t hear God telling me that He is sufficient to meet all my needs. What am I going to eat for breakfast? Ed tries to help me with ideas. He is very supportive & encouraging. Unfortunately, I’m not in the mood for being encouraged. I’m upset. I don’t care about the sugar, root vegetables or additives. I want my grains & peanut butter back. How am I going to adjust? Why did I make the promise to Steven that I will do ANYTHING my doctors tell me I need to do? There is only one way I can keep my promise, with God’s help!
Ed & I go shopping & carefully think through our meal choices. In fact, we decide we need to eat at home more often, in order to stick with this diet, but every time I open the pantry cupboard, it bothers me to look at items I can no longer eat. I have to remove them.
All the kids came home the weekend of Feb. 9th; so, I cleaned the pantry cupboard & removed everything I cannot eat. I placed a few items in a storage cupboard in the garage to have on hand when they are visiting. I placed the remaining items in a large storage container. When the kids came, I told them to take a shopping bag, fill it with the items they want, & take them home.
It is very hard to adjust to this diet! I need to understand why it was necessary to eat like this to make sense of why I should discipline myself to comply with it & to stick with it.
Right after our appointment with Dr. Powers, I want to know what the supplements he recommended are & what they are intended to treat or to help. Ed’s notes do not say, & I cannot remember if Dr. Powers told us or not. I do a search on the Internet & discover their purposes. Then I do a search to see if I can find anything on the low amylose diet. What I find is interesting, but it does not mention any specific benefits for ulcerative colitis or cancer.
I send an email to his receptionist to ask Dr. Powers for a recommendation of book I can read to give me a general overview of the perspective from which he works. I explain, “He obviously works on a much deeper level than I am familiar with, & I like to understand what I am doing & why I am doing it. I want to know what benefits I can expect.”
It takes a few days to get a reply to this & several other questions I asked; he gives me the name of an author, Patrick Quillin. It takes several search engines & cross-referencing before I find one of the author’s websites www.4nutrition.com. This site contains a wealth of information. As I read this information, I find that 4 chapters of one of his books, Beating Cancer With Nutrition, can be opened & read. I read the executive summary, & I know I want the book.
As I wait for the book to arrive in the mail, I return to the website. This information is the beginning of a new adventure. It provides me with a reason for sticking with the diet, even if I don’t like it. It isn’t just helping to strengthen my immune system or to improve my ulcerative colitis. I can starve the cancer cells by avoiding certain foods. Most of the foods I am not permitted to eat are among them! At this point, I can’t imagine this is possible, but this helps me to begin to buy into the diet. I am still telling everyone how miserable I am on this diet. Surely, I am making everyone else miserable, as they listen to me whine. They sympathize with me, which is what I want at that point, but I’m sure they wish I would stop whining about it, after they hear it once.
If I have strong convictions about a matter, I have a stubborn resolve that helps to keep me motivated & self-disciplined. I’m human. I can get lazy & fail. God reminds me that I’m off track, & He helps me to get back on track. As an avid reader, I know that God uses the knowledge & understanding I gain, through my reading, to instill such strong convictions.
Our big decision concerning treatment is made. It actually seems too easy. After all of my anxiety over treatment, it all comes down to taking a tiny pill each day. No surgery. I did not want to have a mastectomy, but I was prepared to do so to save my life. No chemotherapy. I was really scared about how sick I would get. Why did I stress over these things? I know God is in control. He had all the bases covered before I even knew the extent of my disease. (I was not worried about having help; so many people offered to help us, I knew any one of them would be there in a heartbeat to help in any way we expressed we needed help.)
I had no idea there are treatment options besides surgery, chemotherapy & radiation. I learn that there are other alternatives I never would have considered to be forms of treatment for cancer.
I am, for the next week & a half, preoccupied with my migraine headaches that are daily increasing in intensity. By the weekend of Jan. 5th, I have awoken only 3 mornings, in 6 weeks, without a migraine. It is so frustrating to go through my prescriptions & my “bag of tricks” to manage the migraines & still have my head throbbing. It definitely affects my disposition negatively, as I attempt to keep going about my daily activities. It’s really hard to maintain a positive attitude & to try to be pleasant to everyone around me. I can’t take it any longer.
Saturday evening, I ask Ed to take me to the ER for pain shots, to kill that day’s migraine. As I am waiting to be seen by a doctor, I am in tears from the pain. From past experience, I know pain shots will finally break the cycle of pain I am experiencing. After 3 injections, the pain is under control & I am sent home to sleep it off.
With the cycle of pain broken, I awake the next morning without a migraine. Thank you God! I make an appointment with Dr. Pam to discuss this problem; so, I will not repeat this cycle. In November, she had prescribed a new medication to take when I got a migraine. 1990 – 91 I tried medications to prevent migraines but found they were ineffective, caused unacceptable side effects, or caused an allergic reaction. Dr. Pam tells me about a newer medication that is now available. The drawback is the fact that she cannot determine the dosage that will work for me. She can give me a starting dosage. Once each week I will increase the dosage, until I find the dosage that is effective in preventing my migraines. I’m willing to try it.
We talk to Dr. Pam to bring her up to date on my PET scan, final diagnosis, 2nd opinion appointment, & choice of treatment. We ask her opinion of our choice to go with hormone therapy. She explains that this is not her area of expertise, but she will do some research on the current, most common practices & pass along her findings to us.
Ed is back for an appointment a couple of weeks later, & Dr. Pam hands him a stack of current research, most of which pertains to treatment of stage IV invasive ductile carcinoma, positive for hormone receptors. It is obvious she narrowed the research to my exact diagnosis. How many doctors do this? While Ed is there, he tells her I am not feeling well & describes my symptoms. She does not like what she hears. She says her office hours are over at 2:30, & he should bring me back at that time. Dr. Pam is a gem!
Ed stops at home before going back to work. He gives me the research & tells me to be ready to go to see her at 2:30.
I read through the research & find that every article recommends hormone therapy over chemotherapy. Thank you, God, for the medical confirmation of our choice.
Dr. Pam is not surprised when I tell her I read all the research she sent home that morning. She agrees that we made the right choice to go with hormone therapy. This adds to our comfort level with our decision.
Steven had encouraged us to look into clinical trials; so, we asked Dr. Pam if she can help us find clinical trials. It’s already after office hours, but she tells us to go pick up my new prescriptions & come back. She will look up clinical trials, within driving distance, & print them for us. She tells Ed to just knock on the outer office door, when we come back. What doctor does this? We tell her she does not have to do this right away, but she says she is going to be there to catch up on paper work anyway.
Over the next few weeks, I do not have any negative reaction to the new medication to, hopefully, prevent my migraines. They continue, but they are not daily or as severe. This is a welcome relief! They are slowly improving, but I still do not feel they are under control.
Friends had asked us to join them in Florida, for a week or a long weekend, during the 6 weeks they will be staying in Boynton Beach. I told Ed I would like to go, but I cannot make the commitment to buy airline tickets unless my migraines are under control. If I go, I want to enjoy myself, & I don’t want to spoil everyone else’s good time because I have nasty migraines.
January 30th, we have an appointment with Dr. Powers to discuss treatment to strengthen my immune system. We don’t know what to expect. Can he help my ulcerative colitis? Can he help my migraines headaches? We don’t know. How will he strengthen my immune system?
We give Dr. Powers a copy of the PET scan report, which he does not have. I had stated, in a questionnaire I returned to his office Dec. 26th, that my diagnosis is stage IV metastatic breast cancer, but this is the proof. Dr. Powers agrees with our decision to go with hormone therapy. He says my immune system is so compromised, due to my ulcerative colitis, that I cannot handle chemotherapy. In fact, he implies it could cost me my life! He uses much stronger language than Dr. Khalil. This is further confirmation that we made the right decision.
He orders some additional lab tests, recommends taking double my daily, multiple vitamins, 3 other supplements, & he puts me on a very strict low amylose diet.
One supplement he recommends is vitamin C. He says to start with 1,000mg & gradually increase to 4,000mg per day. I, respectfully, tell him that I cannot take supplemental vitamin C, due to my ulcerative colitis; it will cause a flare-up. I know from my reading & from experience.
He suggests that I use Ester C. He went on to explain the role vitamin C can play in killing cancer cells, which sounds wonderful. I am thinking, “I wish I could take extra vitamin C.”
Again, I tell him, respectfully, that I have used Ester C & found that it also causes flare-ups, but I will try it. I want it to work, but I know my past experiences.
I am trying to follow what Dr. Powers is telling us, based on my previous study of nutrition, but he is talking about some information that is foreign to me. I ask some questions. I hope Ed is taking good notes. When I look at the diet sheet, I am shocked! I think, “You’ve got to be kidding!” My impression is that the purpose of this diet is mainly to manage my ulcerative colitis. I cannot eat any grains – no wheat, oats, rye or rice. No root vegetables except onions & garlic. Raw carrots are OK but not cooked. Fruits are OK, except bananas & citrus. Nuts & seeds are OK, except NO peanuts & NO peanut butter. No sugar in any form. No additives that I cannot pronounce.
I’m in a panic! My negative emotions are screaming so loudly that I can’t hear God telling me that He is sufficient to meet all my needs. What am I going to eat for breakfast? Ed tries to help me with ideas. He is very supportive & encouraging. Unfortunately, I’m not in the mood for being encouraged. I’m upset. I don’t care about the sugar, root vegetables or additives. I want my grains & peanut butter back. How am I going to adjust? Why did I make the promise to Steven that I will do ANYTHING my doctors tell me I need to do? There is only one way I can keep my promise, with God’s help!
Ed & I go shopping & carefully think through our meal choices. In fact, we decide we need to eat at home more often, in order to stick with this diet, but every time I open the pantry cupboard, it bothers me to look at items I can no longer eat. I have to remove them.
All the kids came home the weekend of Feb. 9th; so, I cleaned the pantry cupboard & removed everything I cannot eat. I placed a few items in a storage cupboard in the garage to have on hand when they are visiting. I placed the remaining items in a large storage container. When the kids came, I told them to take a shopping bag, fill it with the items they want, & take them home.
It is very hard to adjust to this diet! I need to understand why it was necessary to eat like this to make sense of why I should discipline myself to comply with it & to stick with it.
Right after our appointment with Dr. Powers, I want to know what the supplements he recommended are & what they are intended to treat or to help. Ed’s notes do not say, & I cannot remember if Dr. Powers told us or not. I do a search on the Internet & discover their purposes. Then I do a search to see if I can find anything on the low amylose diet. What I find is interesting, but it does not mention any specific benefits for ulcerative colitis or cancer.
I send an email to his receptionist to ask Dr. Powers for a recommendation of book I can read to give me a general overview of the perspective from which he works. I explain, “He obviously works on a much deeper level than I am familiar with, & I like to understand what I am doing & why I am doing it. I want to know what benefits I can expect.”
It takes a few days to get a reply to this & several other questions I asked; he gives me the name of an author, Patrick Quillin. It takes several search engines & cross-referencing before I find one of the author’s websites www.4nutrition.com. This site contains a wealth of information. As I read this information, I find that 4 chapters of one of his books, Beating Cancer With Nutrition, can be opened & read. I read the executive summary, & I know I want the book.
As I wait for the book to arrive in the mail, I return to the website. This information is the beginning of a new adventure. It provides me with a reason for sticking with the diet, even if I don’t like it. It isn’t just helping to strengthen my immune system or to improve my ulcerative colitis. I can starve the cancer cells by avoiding certain foods. Most of the foods I am not permitted to eat are among them! At this point, I can’t imagine this is possible, but this helps me to begin to buy into the diet. I am still telling everyone how miserable I am on this diet. Surely, I am making everyone else miserable, as they listen to me whine. They sympathize with me, which is what I want at that point, but I’m sure they wish I would stop whining about it, after they hear it once.
If I have strong convictions about a matter, I have a stubborn resolve that helps to keep me motivated & self-disciplined. I’m human. I can get lazy & fail. God reminds me that I’m off track, & He helps me to get back on track. As an avid reader, I know that God uses the knowledge & understanding I gain, through my reading, to instill such strong convictions.
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