This morning in church -- we haven't been there in several weeks -- the guest minister referenced the story of Peter walking on the water from Matthew 14. That is an important story for me; it is the "theme" for this blog and a source of encouragement for me. I feel a bit like Peter in the story, when he sees the waves and becomes afraid:
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!" (v. 29-30)
As soon as Peter took his eyes off Jesus, he saw his circumstances and he became afraid. He started to sink. My prognosis and the words of Kathy Miller are my wind. If I dwell on them for too long, I can feel myself start to sink emotionally. Literally. So, it is important for me to remember Jesus' response:
Immediately Jesus reached out his hand and caught him. You of little faith," he said, "why did you doubt?" And when they climbed into the boat, the wind died down. (v. 31-32).
Do I believe that Jesus is nearby and able to reach out his hand to catch me? I do.... I just hope and pray that he does it soon -- I am ready for my wind to die down. Literally.
Today after church we told our older boys what Dr. Miller had said in her consultation last Wednesday. They continue to react to information in a very consistent way -- Shane is forever the fact finder, asking questions and trying to process all of the information. It is hard to tell how upset he is about the news. He puts on a strong front, and does not show his emotions very openly. Tyler had some questions, but he pretty much wears his heart on his sleeve. He needed more reassurance and encouragement. He liked Psalm 112:7, the Bible verse that I had read before the consultation with Kathy Miller.
Dr. Miller might think she was being compassionate by being so "realistic" about my prognosis, but I really and truly resent the information she gave me -- it is a defeatist attitude that has caused my family much grief. She has past experience and statistics to back up her point of view, but no one knows anyone's outcome over the next two years or beyond. I think my anger is what keeps me from spiraling out of control -- I am determined to prove her wrong and to LIVE a full, long life.
And so my fight goes on -- tomorrow is my next chemo date. It is a 4-hour chemo, and after this one I'll be more than half way through the first round of chemo. Another batch of drugs start after Labor Day. My oncologist continues to be optimistic, and I rely on his optimism. It is much better than anything Dr. Miller had to offer me. Perhaps my oncologist knows that the best "chemo" available is hope.
Showing posts with label Dr. Kathy Miller. Show all posts
Showing posts with label Dr. Kathy Miller. Show all posts
Sunday, August 10, 2008
Thursday, August 7, 2008
He Says, She Says....
Just before my surgery in May, I found a prayer journal in our local Christian bookshop. I use it each week, moving new requests from last week to on-going requests for next week. The journal has a place for answered prayers and praises, and, just on my own, I've been collecting encouraging Bible verses and quotations that I come across. This is the first time in my life I've been intentional about keeping track of prayer requests and answers to prayer. It has been a really interesting activity. One of the Bible verses that I've written in this week's journal is Psalm 112:7:
He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.
This is surely a verse that God knew I would need for my consultation with Dr. Kathy Miller on Wednesday morning. Both of my sisters went with me, and Paul was able to listen to the doctor's comments via my cell phone. She spent probably about 45 minutes with me, and essentially told me to give up chemotherapy now because she was 95% certain that I would develop metastatic (incurable) cancer within the next 1-2 years. I shouldn't "waste" my good time now feeling badly from unnecessary and unhelpful chemo. She was kind and compassionate as she offered this news, but definite. In her mind, my future is short and it is grim.
Wow... Somehow my sisters and I were able to eat lunch afterward. Each bite was a heavy one. We discussed how in the world I would break this news to the rest of my family and to our boys?? Paul left his office, and went home to telephone his family and regroup. I also called my Beaumont oncologist to let him know that Dr. Miller would be calling him, and that her "treatment plan" was radically different than his. If he could talk to her before our appointment with him on Monday, that would be great.
He called me at my parents home that same night.
God bless him -- he was as upbeat and hopeful as she was grim.
By the time he called me, he had already talked to Dr. Miller, and he said he completely disagreed with her assessment. Her job is deal with metastatic (incurable) disease, and his job is to do whatever necessary to make sure his patients do not progress that far. He said he felt "strongly" that the chemo drugs I am on now are a good strategy and that we should stay the course. I said I would continue the chemo that has already started. He also suggested (to Paul in a separate phone call) that I buy a stack of post cards -- presumably to mail out one each year to Kathy Miller!
So, who is right and who is wrong? Only time will tell. Only God knows.
But I'm not the kind of person who is just willing to lay down and die. To end chemo now because it might not work seems like a defeatist attitude. One of my favorite quotes is from the Introduction of a book by Sue Buchanan entitled I'm Alive and the Doctor's Dead:
"The computer (or statistics or expert doctor or...) doesn't know you. It doesn't know how often you laugh or cry or that you have spunk. It doesn't know about the support of your family and friends and how well you're loved; whether or not you're prayed for isn't taking into consideration by the statisticians. And no matter how many mega-giga-humonga-bytes-bits-RAM the computer may contain, it simply isn't capable of computing the fact that -- are you ready for this? -- the God of the universe has a timetable for your life and mine! Yea! Rah! Cheers! Maybe a hallelujah or two!"
My future is unknown to me, but it is secure in God's hands. That is what He wanted me to remember with Psalm 112:7. I'm not unrealistic -- my time with my family might be very short. I might never see my kids graduate or hold my grandchildren. God forbid, Paul might retire as a widow. But I am also not giving up -- I'll continue with a doctor who has hope and who gives me hope. I can make better diet/exercise choices. I'll try to live each day fully and completely. It is all in God's hands. He is the true expert.
He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.
This is surely a verse that God knew I would need for my consultation with Dr. Kathy Miller on Wednesday morning. Both of my sisters went with me, and Paul was able to listen to the doctor's comments via my cell phone. She spent probably about 45 minutes with me, and essentially told me to give up chemotherapy now because she was 95% certain that I would develop metastatic (incurable) cancer within the next 1-2 years. I shouldn't "waste" my good time now feeling badly from unnecessary and unhelpful chemo. She was kind and compassionate as she offered this news, but definite. In her mind, my future is short and it is grim.
Wow... Somehow my sisters and I were able to eat lunch afterward. Each bite was a heavy one. We discussed how in the world I would break this news to the rest of my family and to our boys?? Paul left his office, and went home to telephone his family and regroup. I also called my Beaumont oncologist to let him know that Dr. Miller would be calling him, and that her "treatment plan" was radically different than his. If he could talk to her before our appointment with him on Monday, that would be great.
He called me at my parents home that same night.
God bless him -- he was as upbeat and hopeful as she was grim.
By the time he called me, he had already talked to Dr. Miller, and he said he completely disagreed with her assessment. Her job is deal with metastatic (incurable) disease, and his job is to do whatever necessary to make sure his patients do not progress that far. He said he felt "strongly" that the chemo drugs I am on now are a good strategy and that we should stay the course. I said I would continue the chemo that has already started. He also suggested (to Paul in a separate phone call) that I buy a stack of post cards -- presumably to mail out one each year to Kathy Miller!
So, who is right and who is wrong? Only time will tell. Only God knows.
But I'm not the kind of person who is just willing to lay down and die. To end chemo now because it might not work seems like a defeatist attitude. One of my favorite quotes is from the Introduction of a book by Sue Buchanan entitled I'm Alive and the Doctor's Dead:
"The computer (or statistics or expert doctor or...) doesn't know you. It doesn't know how often you laugh or cry or that you have spunk. It doesn't know about the support of your family and friends and how well you're loved; whether or not you're prayed for isn't taking into consideration by the statisticians. And no matter how many mega-giga-humonga-bytes-bits-RAM the computer may contain, it simply isn't capable of computing the fact that -- are you ready for this? -- the God of the universe has a timetable for your life and mine! Yea! Rah! Cheers! Maybe a hallelujah or two!"
My future is unknown to me, but it is secure in God's hands. That is what He wanted me to remember with Psalm 112:7. I'm not unrealistic -- my time with my family might be very short. I might never see my kids graduate or hold my grandchildren. God forbid, Paul might retire as a widow. But I am also not giving up -- I'll continue with a doctor who has hope and who gives me hope. I can make better diet/exercise choices. I'll try to live each day fully and completely. It is all in God's hands. He is the true expert.
Tuesday, July 29, 2008
Fourth Chemo & A Family Visit
Today was my fourth chemo -- a short one. We left home just after 8:30 a.m., dropped our puppy and kids off at Paul's sister house (where they swam in her pool all morning), and then Paul and I headed to the hospital for my 11:00 oncology appointment.
We had a good talk with the oncologist. He brought up the study that questions one of the meds I'm taking. He said he knew that less than satisfactory results have been found in the study, but he believes the study focused on breast cancer patients in general. My specific cancer (triple negative) is a particularly aggressive and tricky one to treat -- he still thinks it reasonable to use the med for my treatment. I expected this would be the attitude he would take, but I appreciated that he brought up the information first. He was forthcoming about the study and about his rationale for still using the med. Needless to say, I received the chemo today and will continue to do so as we have originally planned.
Then we talked about my visit to Dr. Kathy Miller next week. He expressed his support of having another doctor's opinion, and emphasized that it didn't bother him to have me going to visit her. It was almost like he could read my mind and knew what words I needed to hear. The power of prayer? I gotta believe to some to extent... At any rate, he even asked me to ask about her about a specific medication which is her expertise. If she thinks it is a good/reasonable med for me, then he will plan to add it to my vast cocktail of drugs. He admitted that he just wasn't sure how affective this drug is for my BC and treatment.
Finally, my doc told me specifically what information Dr. Miller would need to make a good assessment of my case, and we left the hospital with complete path reports and "slides" to take to her next Wednesday.
Our meeting today was not rushed, and was a good, open exchange. Paul was able to ask questions that he has had, and I walked away feeling really good about things. My blood counts were low again (white blood count and hemoglobin). I'll get a shot tomorrow for the white blood count, and he's asked me to start taking iron supplements while I'm on chemo. The shot is not 100% necessary, but he said he'd feel better that I have a boost while traveling next week. Better safe than sorry where an infection and subsequent hospital could happen.
After my chemo, Paul and I went back to his sister's house. She and his parents had dinner for us, Liam played more pool volleyball with Karen and Paul, and then we headed home. A long day, but a good one. During my first round of chemo last year, my parents were up to stay with the kids often. That time was good bonding time for them, as our families live 7 hours apart. The same is happening with the kids and Paul's side of the family this summer. One silver lining of cancer -- improved family relationships! You really start to talk about some of the important things of life, and you make more of an effort to be together and make the best of the time together. At least, that is what I have been finding.
Cancer complicates life, but life still goes on. We leave for my parents house on Friday morning, but we still have so many practical things to take care of before then -- tomorrow I'll call around and eventually get two new tires put on our van.... end of the month is coming, which means I'll spend time paying bills.... we have a window being replaced in the entry of our home on Thursday... Shane has an orthodontist visit on Thursday, Tyler has a follow up to his wisdom teeth surgery early Friday morning.... Paul (and someone else?) needs to run up to our cottage in Manistee before the weekend (long story)....
Life does not stop for chemo or for cancer. How much of this to-do list will be accomplished before Friday morning? All of it in some shape or form. It helps out tremendously that Shane can drive. And, I'm counting on a couple of good post-chemo days to get this all done. As much of it as possible tomorrow, just in case Thursday is a bad day for me. I will not over do, and will pace myself. I promise.
Also, this will probably be the last post for several days -- once I'm in Indiana, I doubt I'll have great Internet access. And my parents will be visiting August 8-10. Shane has his wisdom teeth removed August 8. Things may not likely slow down until after my next chemo on August 11 -- look for an update sometime between now and then. Or soon thereafter.... I think life will be on a slower, even pace by then! :-)
We had a good talk with the oncologist. He brought up the study that questions one of the meds I'm taking. He said he knew that less than satisfactory results have been found in the study, but he believes the study focused on breast cancer patients in general. My specific cancer (triple negative) is a particularly aggressive and tricky one to treat -- he still thinks it reasonable to use the med for my treatment. I expected this would be the attitude he would take, but I appreciated that he brought up the information first. He was forthcoming about the study and about his rationale for still using the med. Needless to say, I received the chemo today and will continue to do so as we have originally planned.
Then we talked about my visit to Dr. Kathy Miller next week. He expressed his support of having another doctor's opinion, and emphasized that it didn't bother him to have me going to visit her. It was almost like he could read my mind and knew what words I needed to hear. The power of prayer? I gotta believe to some to extent... At any rate, he even asked me to ask about her about a specific medication which is her expertise. If she thinks it is a good/reasonable med for me, then he will plan to add it to my vast cocktail of drugs. He admitted that he just wasn't sure how affective this drug is for my BC and treatment.
Finally, my doc told me specifically what information Dr. Miller would need to make a good assessment of my case, and we left the hospital with complete path reports and "slides" to take to her next Wednesday.
Our meeting today was not rushed, and was a good, open exchange. Paul was able to ask questions that he has had, and I walked away feeling really good about things. My blood counts were low again (white blood count and hemoglobin). I'll get a shot tomorrow for the white blood count, and he's asked me to start taking iron supplements while I'm on chemo. The shot is not 100% necessary, but he said he'd feel better that I have a boost while traveling next week. Better safe than sorry where an infection and subsequent hospital could happen.
After my chemo, Paul and I went back to his sister's house. She and his parents had dinner for us, Liam played more pool volleyball with Karen and Paul, and then we headed home. A long day, but a good one. During my first round of chemo last year, my parents were up to stay with the kids often. That time was good bonding time for them, as our families live 7 hours apart. The same is happening with the kids and Paul's side of the family this summer. One silver lining of cancer -- improved family relationships! You really start to talk about some of the important things of life, and you make more of an effort to be together and make the best of the time together. At least, that is what I have been finding.
Cancer complicates life, but life still goes on. We leave for my parents house on Friday morning, but we still have so many practical things to take care of before then -- tomorrow I'll call around and eventually get two new tires put on our van.... end of the month is coming, which means I'll spend time paying bills.... we have a window being replaced in the entry of our home on Thursday... Shane has an orthodontist visit on Thursday, Tyler has a follow up to his wisdom teeth surgery early Friday morning.... Paul (and someone else?) needs to run up to our cottage in Manistee before the weekend (long story)....
Life does not stop for chemo or for cancer. How much of this to-do list will be accomplished before Friday morning? All of it in some shape or form. It helps out tremendously that Shane can drive. And, I'm counting on a couple of good post-chemo days to get this all done. As much of it as possible tomorrow, just in case Thursday is a bad day for me. I will not over do, and will pace myself. I promise.
Also, this will probably be the last post for several days -- once I'm in Indiana, I doubt I'll have great Internet access. And my parents will be visiting August 8-10. Shane has his wisdom teeth removed August 8. Things may not likely slow down until after my next chemo on August 11 -- look for an update sometime between now and then. Or soon thereafter.... I think life will be on a slower, even pace by then! :-)
Tuesday, July 15, 2008
Third Time is the Charm....
I was able to reschedule my appointment with Dr. Kathy Miller (much to her secretary's dismay) for Wednesday morning, August 6. So, that is good news.
Paul will not be able to go to the appointment with me, but, my sister Diane (who is a nurse) has agreed to go with me. And today she had the genius idea of setting up a conference call so that Paul can participate in the meeting with us on the morning of the 6th. I'm such a housewife -- something like that wouldn't have come to my mind in a million years!
This is an "off" week for my chemotherapy, so I'm feeling well. This morning I walked our dog around "the block" for the first time since my May 19 surgery. That is progress. And, the bruising and tenderness in my legs is gone. It's so weird to me how something like that just comes and goes?
Today I had lunch with some friends, and then went to JoAnn Fabrics to find material for scarves -- a lady @ the American Cancer Society suggested that to me: instead of paying top dollar for scarves marketed to cancer patients, take in a scarf size that you know will work for you, and buy material that you like. With a simple straight stitch on a sewing machine, I can make as many scarves as I like for about $5 each! My hair is thinning out, but I think I will let it thin for a little while before shaving it. It is amazing to me how many hairs I can pull loose, but at the same time how many hairs are still left on my head!? Makes me think of the verse And even the very hairs of your head are all numbered. (Matthew 10:30).
Paul will not be able to go to the appointment with me, but, my sister Diane (who is a nurse) has agreed to go with me. And today she had the genius idea of setting up a conference call so that Paul can participate in the meeting with us on the morning of the 6th. I'm such a housewife -- something like that wouldn't have come to my mind in a million years!
This is an "off" week for my chemotherapy, so I'm feeling well. This morning I walked our dog around "the block" for the first time since my May 19 surgery. That is progress. And, the bruising and tenderness in my legs is gone. It's so weird to me how something like that just comes and goes?
Today I had lunch with some friends, and then went to JoAnn Fabrics to find material for scarves -- a lady @ the American Cancer Society suggested that to me: instead of paying top dollar for scarves marketed to cancer patients, take in a scarf size that you know will work for you, and buy material that you like. With a simple straight stitch on a sewing machine, I can make as many scarves as I like for about $5 each! My hair is thinning out, but I think I will let it thin for a little while before shaving it. It is amazing to me how many hairs I can pull loose, but at the same time how many hairs are still left on my head!? Makes me think of the verse And even the very hairs of your head are all numbered. (Matthew 10:30).
Wednesday, July 9, 2008
A Second Opinion for a Second Time
Paul and I are finding ourselves at another "fork in the road" related to my treatment. We both have had the nagging feeling that we need to do more... research more... for my treatment. We talked about this at lunch today, and we are moving forward.
We trust my oncologist, but we also realize he is not a breast cancer specialist; nor does he specialize in triple negative breast cancer. There are doctors in the field who are that specialized, and we're to the point where we want to see one of them. If only to confirm that the course of treatment that I am currently on is a good one for me.
Seeking a second opinion makes me feel disloyal to my current oncologist. It worries me that it will strain the relationship that we have with him, and I don't want that. But, it is reckless to ignore that doctors specialize in my specific kind of cancer. To have access to them and to not pursue them would be unbearable if my cancer progresses.
So... the name that keeps coming to mind is Dr. Kathy Miller, at the IU Med Center in Indianapolis. She has extensively written/researched triple negative breast cancer. My current oncologist actually referenced one of her studies as rationale for the chemotherapy that I am using now. And, conveniently, her office is within a couple of hours of my parent's house in Indiana.
So, after lunch I got on the internet and found the telephone number for the IU Med Center Oncology office. I asked if anyone in their office specialized in triple negative breast cancer, and I was stunned to hear her say it would be Kathy Miller and that I could set up a consultation -- I thought for sure that Dr. Miller would be "too high up" to take on new patients. But, her nurse is supposed to be calling me back to take a history and set up the next step. Every time the phone rings I have jumped at it, just like a teenager!
It boggles my mind that the potential for expert opinion on my case has been only a phone call away.... That I made the idea of calling another doctor something so "big" in my mind that I wasn't even sure how to do it. I guess in a way, this phone call was a little bit of "water walking" for me -- I wasn't sure I could do it, but God has at least made the path a straight one for me: to know about this doctor, and to have her specifically recommended to me after the first phone call -- the road does not get any straighter than that.
I'll write again once I hear back from her office and know more. Please continue to pray for direction and wisdom. I think this is a potential turning point for my treatment.
We trust my oncologist, but we also realize he is not a breast cancer specialist; nor does he specialize in triple negative breast cancer. There are doctors in the field who are that specialized, and we're to the point where we want to see one of them. If only to confirm that the course of treatment that I am currently on is a good one for me.
Seeking a second opinion makes me feel disloyal to my current oncologist. It worries me that it will strain the relationship that we have with him, and I don't want that. But, it is reckless to ignore that doctors specialize in my specific kind of cancer. To have access to them and to not pursue them would be unbearable if my cancer progresses.
So... the name that keeps coming to mind is Dr. Kathy Miller, at the IU Med Center in Indianapolis. She has extensively written/researched triple negative breast cancer. My current oncologist actually referenced one of her studies as rationale for the chemotherapy that I am using now. And, conveniently, her office is within a couple of hours of my parent's house in Indiana.
So, after lunch I got on the internet and found the telephone number for the IU Med Center Oncology office. I asked if anyone in their office specialized in triple negative breast cancer, and I was stunned to hear her say it would be Kathy Miller and that I could set up a consultation -- I thought for sure that Dr. Miller would be "too high up" to take on new patients. But, her nurse is supposed to be calling me back to take a history and set up the next step. Every time the phone rings I have jumped at it, just like a teenager!
It boggles my mind that the potential for expert opinion on my case has been only a phone call away.... That I made the idea of calling another doctor something so "big" in my mind that I wasn't even sure how to do it. I guess in a way, this phone call was a little bit of "water walking" for me -- I wasn't sure I could do it, but God has at least made the path a straight one for me: to know about this doctor, and to have her specifically recommended to me after the first phone call -- the road does not get any straighter than that.
I'll write again once I hear back from her office and know more. Please continue to pray for direction and wisdom. I think this is a potential turning point for my treatment.
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