Tuesday, January 26, 2010
December 31, 2009 Heart Fare
I awoke reciting John 15 which I am striving to memorize. I helps, I've found, to repeat the passage I'm working on by saying it in the morning before I rise and in the evening before I fall asleep. Then, I write it out, actually my thumbs punch it into my Blackberry, and I double check to be sure my jots and tittles are correct. Once I have it down, I add another verse. In a world full of Barnes & Nobles, Borders and Bookbinders, it may be surprising to some younger folk that a short time ago, book banning was fairly commonplace. Over the years books have been banned when the powers that be determined a particular book promoted thinking in contradiction to the best interests of society. In the early 50's Ray Bradbury wrote a book on the subject titled 'Farenheit 451', "the temperature at which book paper burns". Interestingly, his book itself was banned from certain libraries, deemed too controversial. Set in a futuristic oppressive American society, it is the story of Guy Montag, a fireman, whose job rather than putting fires out, is setting fires to destroy books. He describes his job: "Well, it's a job just like any other. Good work with lots of variety. Monday, we burn Miller; Tuesday, Tolstoy; Wednesday, Walt Whitman; Friday, Faulkner; and Saturday and Sunday, Schopenhauer and Sartre. We burn them to ashes and then burn the ashes. That's our official motto". But Guy's curiosity soon has him wondering at the contents of some of the great works he is destroying and he begins to sneak them home to read until his wife informs on him and he's forced to flee. As the movie ends, Guy joins a group of renegade intellectuals (“the Book People”). They are a part of a nationwide network of book lovers who have memorized many great works of literature and philosophy. Guy is given the assignment og memorizing the Book of Ecclesiastes. The movie made from this book in the sixties left quite an impression on me, especially the final scene of a young boy sitting at the knee of an old man, learning Tolstoy's 'War and Peace'. A seemingly daunting task, I was left asking myself, what if there were no books? What if there were no Bibles? If you knew at some future date, all bibles would be confiscated and destroyed, would that make it more precious? Many of our brethren, are oppressed in just such a way but does it spur us on to commit passages and chapters, line and verse, to memory? Did you know that the Bible was named among objects banned from the 2008 Olympic village in Beijing. What is so threatening about the Bible? What indeed? Freedom? Hope? Courage? "Your word have I hidden in my heart, that I might not sin against you." Psalm 119:11
December 19, 2009 What God is telling me
"What I tell you in the darkness, speak ye in the light" (Matt. 10:27).
Last Sunday my pastor challenged us to be in the Word. Not just to read it but to watch for and listen to what God was telling us individually.
I have been experiencing a bout of depression - whether from hormonal deprivation on my anti-cancer drug or spiritual warfare - it was an unfamiliar and difficult time. I opened the word Tuesday Morning, asking God to restore my joy. An online devotional I'd read that morning suggested John 15 as a passage to pray over. As I began to read and pray for understanding, each word sank in with fresh meaning. I read slowly, pausing for God's clarification this time:
"I am the true vine, My Father is the vinedresser. Every branch in Me that does not bear fruit, He takes away; and every branch that bears fruit, He prunes it so that it may bear more fruit. You are already clean because of the word I have spoken to you. Abide in me and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in me."
It soaked in, filling me with a fresh understanding. Abiding in Him, the living Word. And the Word in me. I realized that the joy I sought, required my participation, my ingestion of His Word. I grabbed a 3X5 card and began to write out this passage to memorize. I read on:
"I am the vine, you are the branches; He who abides in me and I in Him, he bears much fruit, for apart from Me you can do nothing. If anyone does not abide in Me, he is thrown away as a branch and dries up; and they gather them, and cast them into the fire and they are burned. If you abide in Me and my words abide in you, ask whatever you wish, and it will be done for you."
I felt my excitement growing. This is what my pastor was talking about. I was hearing God speak to me. I was "getting it". My prayer for restored joy was being answered here:
"My Father is glorified by this, that you bear much fruit and so prove to be My disciples. Just as the Father has loved Me, I have also loved you; abide in My love. If you keep my commandments, you will abide in My love; just as I have kept My Father's commandments and abide in His love. These things I have spoken to you so that My joy may be in you, and that your joy may be made full."
My jaw dropped open at these last words. I had prayed for joy. I hadn't searched my concordance for passages on joy and yet here it was, telling me just what would resore my joy.
A friend recently shared that each Christmas she asks Jesus what he wants from her for His birthday. I liked that and prayed that He would tell me what I could give Him. This is my answer: He wants my time with Him - abiding in Him through the prayerful study of His Word and letting Him abide in me as I memorize this and other passages that He gives me.
The very next day, as I was rushing in the morning, deprived of my bible time. I found myself reciting these words "I am the true vine, my Father..." I smiled to myself, knowing the He, indeed, was abiding in me.
Last Sunday my pastor challenged us to be in the Word. Not just to read it but to watch for and listen to what God was telling us individually.
I have been experiencing a bout of depression - whether from hormonal deprivation on my anti-cancer drug or spiritual warfare - it was an unfamiliar and difficult time. I opened the word Tuesday Morning, asking God to restore my joy. An online devotional I'd read that morning suggested John 15 as a passage to pray over. As I began to read and pray for understanding, each word sank in with fresh meaning. I read slowly, pausing for God's clarification this time:
"I am the true vine, My Father is the vinedresser. Every branch in Me that does not bear fruit, He takes away; and every branch that bears fruit, He prunes it so that it may bear more fruit. You are already clean because of the word I have spoken to you. Abide in me and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in me."
It soaked in, filling me with a fresh understanding. Abiding in Him, the living Word. And the Word in me. I realized that the joy I sought, required my participation, my ingestion of His Word. I grabbed a 3X5 card and began to write out this passage to memorize. I read on:
"I am the vine, you are the branches; He who abides in me and I in Him, he bears much fruit, for apart from Me you can do nothing. If anyone does not abide in Me, he is thrown away as a branch and dries up; and they gather them, and cast them into the fire and they are burned. If you abide in Me and my words abide in you, ask whatever you wish, and it will be done for you."
I felt my excitement growing. This is what my pastor was talking about. I was hearing God speak to me. I was "getting it". My prayer for restored joy was being answered here:
"My Father is glorified by this, that you bear much fruit and so prove to be My disciples. Just as the Father has loved Me, I have also loved you; abide in My love. If you keep my commandments, you will abide in My love; just as I have kept My Father's commandments and abide in His love. These things I have spoken to you so that My joy may be in you, and that your joy may be made full."
My jaw dropped open at these last words. I had prayed for joy. I hadn't searched my concordance for passages on joy and yet here it was, telling me just what would resore my joy.
A friend recently shared that each Christmas she asks Jesus what he wants from her for His birthday. I liked that and prayed that He would tell me what I could give Him. This is my answer: He wants my time with Him - abiding in Him through the prayerful study of His Word and letting Him abide in me as I memorize this and other passages that He gives me.
The very next day, as I was rushing in the morning, deprived of my bible time. I found myself reciting these words "I am the true vine, my Father..." I smiled to myself, knowing the He, indeed, was abiding in me.
August 7, 2009 Transitions
Three months have passed since I finished my breast cancer treatment. Yesterday I had my hair done for the first time in almost a year. I have looked forward to this like a child anticipates Christmas morning. And after a full year of appointments of a less thrilling nature I feel like an excited girl.
In the morning I dress for work with my wig, already hotflashing as I begin a busy schedule of negotiating three contracts. Hotflashes are going to remain a way of life for the five years I'm supposed to take Femara, the anti-cancer wonder pill. So by afternoon I am enthusiastically sliding into my hairdresser's chair throwing of my trusted disguise that has seen me through many tough days. My own hair is four inches long and two-toned from the color job my daughter did at the end of my radiation in April. The ends are a pale mousy brown and the roots mostly white.
Courtland is a tall lanky blonde. Her hair falls nearly to her waist in a silky curtain. I know, only because she's told me, she is ten years older than she looks. She is pretty and sweet and soft spoken and she's determined and excited about my coming out hairdo. She wants me to "really really love it". I remind her I will be happy with anything. I've never been so unpicky. This is more exciting to me than next Spring's foob job, my pending reconstruction.
As she washes and colors and cuts, my mind wanders to the days I pulled handfuls of hair from my head. I remember the painful scalp, my husband shaving the remains, the strange nakednes and how cold it made me feel. I remember the pink cap I lived in and even wore through surgery. And I remember the stranger I faced in the mirror. All of the year tumbles through my mind right up to now. And I am left with the precious memories of feeling loved and cherished through the whole ordeal and knowing I rested in the arms of God.
Three hours later, I am not disappointed. She's done her best to copy the Annette Bening photo I've brought and I leave with a short, dark-brown-with-highlights cut that is young and spiky. But if you'd seen me leave you'd only have noticed a happy customer with a huge smile. I feel free out in public without my wig.
Yet, even as I write this I'm keenly aware of a friend who is on chemo for life - never to run her fingers through her hair again. And little Kate McRae who is losing her five-year old golden locks at this moment as chemicals do battle with her brain tumor. So I will just be grateful for today, for this silly little joy.
A couple of days ago my husband left early before I was dressed. He popped into my office shortly after I arrived. He said he just came to see how I looked. "You always dazzle me in the morning" he said. I realized, though he never complains, I come home at night hollaring "hello" down the hall as I beeline to my closet to remove my wig and prosthetic bra and change into my lounging garb. After not seeing me all day, he sees a wig-flattened head of oddly colored hair atop a flat chested boyish figure. We're halfway back.
June 8, 2009 Biopsy Plan
Shoyei and I have just come from seeing Dr. Corn. Yes, we decided she was the best choice to determine if this "lump" is anything. We learned a lot.
First of all, she had a hard time finding it and it does seem as if it has shrunk. She explained that the radiation has done a lot of damage to the tissue and even a fat cell would constrict and harden. She thinks that's what I was feeling. She said it would be really hard to punch biopsy it. So we will wait a couple of months and revisit with her to note any changes.
It makes sense and is why I have to wait 6 to 9 months before they will do my reconstruction. I am told my muscles will slowly relax and this tightness will become looser. Sounds good to me. I am relieved.
First of all, she had a hard time finding it and it does seem as if it has shrunk. She explained that the radiation has done a lot of damage to the tissue and even a fat cell would constrict and harden. She thinks that's what I was feeling. She said it would be really hard to punch biopsy it. So we will wait a couple of months and revisit with her to note any changes.
It makes sense and is why I have to wait 6 to 9 months before they will do my reconstruction. I am told my muscles will slowly relax and this tightness will become looser. Sounds good to me. I am relieved.
May 16, 2009 R 'n R
Shoyei and I drove to San Diego, a six and a half hour trip, for a few days of R 'n R.
The first time I heard the term R 'n R my college roommate, Hillary, was flying to Hawaii to meet up with her high school sweetheart who was on a government sponsored break from the war in Vietnam. I remember wondering at the time how he would ever be able to go back into the jungle, into the horror. They wrote to each other every day of our freshman year. Once, a week passed with no letter from Michael. Then finally a letter arrived in a Red Cross envelope. Hillary tore into it, and sighed with relief - his wound was not serious. I later met her friend. He had become a heroine addict, a little habit he picked up on the job. I had become a war protester, something I picked up on campus. But I divert.
We begin our trip with a stop at Dr. Kato's office for my monthly blood check. I tell Dr. Kato I have researched Zometa and decided not to take it for now. I had been scheduled for an infusion of Zometa today. It has so many serious side affects and there are questions about the wisdom of "building" bone artificially. If I continue to tolerate the Femara, which I'm scheduled to be on for five years, we will keep an eye on my bones with an annual density test. In the meantime I am studying the best calcium foods and natural supplements. I am learning to eat for healthy cell defense.
The lab tech draws my blood after several minutes of fumbling with a big needle in the wrong vein before switching to a smaller needle in the better vein. It is the most painful blood draw I have had. I whisper to Dr. Kato's nurse on the way out to make a note on my file that she, Carla, will personally draw my blood. I've come to know her touch to be deft and painless. I whisper so as not to hurt the kind, but bumbling technician. I've been grumbling to myself about my port scar which still itches and irritates but now I think back gratefully that I was spared this pain by having it. I take two Ibuprofen and massage my aching arm.
We continue on our journey. Rest and Relaxation. To be refreshed to return to the battles of life. A few days to do what we want or nothing at all is indeed refreshing. We have both been through the battle. I am praying I won't have to return to the jungle and horror of Cancer. My "punch" biopsy is scheduled for June 8th.
The still waters of the marina remind me to "be still and know" that He is God. I once had a vision of myself laying on my belly high on a bluff overlooking a marina. And there I saw a small moored skiff. There was a girl lying on her back on the floor of the boat feeling the gentle rocking of the water. It was me. Aptly named we are sheltered here for a few days from the maelstrom of life:
May 7, 2009 The Exam
I called Dr. Kato's office first thing Monday morning and they told me to come on down - the doctor would want to check out my lump. We jumped in the car and drove the familiar 100 mile trip to his office and were quickly ushered in. I lay on the examining table while Dr. Kato probed the spot in a bouncing-end-of-the-fingers motion. My "lump" is the size of a grain of rice so his examining method seems strange. Can he feel it? He face is unreadable as he says "I'm going to have Dr. Kuske look at this. He's right down the hall." And off he goes to fetch him.
As soon as the door is closed my husband attempts to duplicate Dr. Kato's trampoline style examination and determines he must've missed it. He has me sit up, I humor him by complying. His finger goes to the ballpoint "X". "It's easier to feel when you're sitting up," he says.
"I'd hoped he would say, 'oh that's nothing, just a little fatty necrosis'," I say to my husband. I read about such things in my effort to diagnose myself. Just a little bit of fat that died due to a lack of blood supply.
Dr. Kuske enters with Dr. Kato and I realize this is the first time I have seen them together. My team. I have formed a deep affection for them despite their prior missteps. They're human, I've come to understand. My life is literally in their hands. "She's marked it for us," Dr. Kato tells Dr. Kuske proudly. "Very good," says Dr. Kuske drawing out "very" as he feels for the lump. "Is this new?" He asks me in a tone to suggest it shouldn't be there after seven weeks of radiation. I don't say what I'm thinking, that it lies just outside the remaining "tan" line. Did his beams miss it? I know he can see that for himself. "I don't know," I answer, "I haven't really started examining my self yet." He seems stymied. What is it, he's asking himself, his face far more readable than his partner. "We could do a punch biopsy," he says, directing his comment to Dr. Kato. "I've got everything here to do it," he adds a bit proudly. Dr. Kato nods, clearly deferring to Dr. Kuske on this one. I'm certainly not going back to Dr. Corn. "But I'd want to wait a month until you're completely healed from the radiation," he says to us all."I'm not sure I can wait a month," I say, "You don't think I'm healed enough to do it now," I ask? "I'd rather wait," he repeats, "you know there's a one in a thousand chance this is anything," he says looking directly into my eyes. That is what I came to hear I think to myself so I take a deep breath and agree to wait.
"Let's see what happens in a month," he concludes, "and if you still want the biopsy we'll do it then." If I still want the biopsy I wonder to myself. I'm pretty sick of being cut into. But I will research "punch biopsies" on the trusty Google search where I get all my medical information.
As we drive away the words "one in one thousand" comfort me and I determine this is nothing at all. In a month I will be sure of that hope.
As soon as the door is closed my husband attempts to duplicate Dr. Kato's trampoline style examination and determines he must've missed it. He has me sit up, I humor him by complying. His finger goes to the ballpoint "X". "It's easier to feel when you're sitting up," he says.
"I'd hoped he would say, 'oh that's nothing, just a little fatty necrosis'," I say to my husband. I read about such things in my effort to diagnose myself. Just a little bit of fat that died due to a lack of blood supply.
Dr. Kuske enters with Dr. Kato and I realize this is the first time I have seen them together. My team. I have formed a deep affection for them despite their prior missteps. They're human, I've come to understand. My life is literally in their hands. "She's marked it for us," Dr. Kato tells Dr. Kuske proudly. "Very good," says Dr. Kuske drawing out "very" as he feels for the lump. "Is this new?" He asks me in a tone to suggest it shouldn't be there after seven weeks of radiation. I don't say what I'm thinking, that it lies just outside the remaining "tan" line. Did his beams miss it? I know he can see that for himself. "I don't know," I answer, "I haven't really started examining my self yet." He seems stymied. What is it, he's asking himself, his face far more readable than his partner. "We could do a punch biopsy," he says, directing his comment to Dr. Kato. "I've got everything here to do it," he adds a bit proudly. Dr. Kato nods, clearly deferring to Dr. Kuske on this one. I'm certainly not going back to Dr. Corn. "But I'd want to wait a month until you're completely healed from the radiation," he says to us all."I'm not sure I can wait a month," I say, "You don't think I'm healed enough to do it now," I ask? "I'd rather wait," he repeats, "you know there's a one in a thousand chance this is anything," he says looking directly into my eyes. That is what I came to hear I think to myself so I take a deep breath and agree to wait.
"Let's see what happens in a month," he concludes, "and if you still want the biopsy we'll do it then." If I still want the biopsy I wonder to myself. I'm pretty sick of being cut into. But I will research "punch biopsies" on the trusty Google search where I get all my medical information.
As we drive away the words "one in one thousand" comfort me and I determine this is nothing at all. In a month I will be sure of that hope.
May 2, 2009 Chapter 2
There's a new sense of freedom post treatment. I expected to feel paranoia waiting for the cancer to rear its ugly head again. So far I've only felt impatient - waiting to regain my strength. I get dizzy whenever I bend over and I still tire more than I used to. I haven't really thought about cancer since I walked out of the door of the radiation center the last night. I've been back to work full steam and it's felt normal and it's felt wonderful. Until yesterday.
I found a new lump. It is tiny like the little lumps I felt before. It is just beneath my skin on the same "breast". I guide my husband's finger to the site. He can feel it too. He made a comment last week which, at the moment, seemed like an omen and sent a shiver through me. He said, "Anyone can make it through a bout of cancer with some sense of grace. The real test comes when the cancer returns." My brother is proof of that. And my friend Cindy. And Gerri. And me? Am I to be re tested? So soon?
I will call Dr. Kato on Monday to schedule an appointment. Is it scar tissue? I was going to wait for my scheduled visit to him at the end of the month but we need to know. It's odd that I have no sense of fear this time. I've been here before. It's still fresh. Still familiar. I just didn't expect to be back so soon. Perhaps it's nothing. Isn't that what I told myself last time? Shoyei talked to his doctor about it yesterday who told him he seriously doubted this would be anything so soon(less than two weeks) after treatment. I pray he is right.
I found a new lump. It is tiny like the little lumps I felt before. It is just beneath my skin on the same "breast". I guide my husband's finger to the site. He can feel it too. He made a comment last week which, at the moment, seemed like an omen and sent a shiver through me. He said, "Anyone can make it through a bout of cancer with some sense of grace. The real test comes when the cancer returns." My brother is proof of that. And my friend Cindy. And Gerri. And me? Am I to be re tested? So soon?
I will call Dr. Kato on Monday to schedule an appointment. Is it scar tissue? I was going to wait for my scheduled visit to him at the end of the month but we need to know. It's odd that I have no sense of fear this time. I've been here before. It's still fresh. Still familiar. I just didn't expect to be back so soon. Perhaps it's nothing. Isn't that what I told myself last time? Shoyei talked to his doctor about it yesterday who told him he seriously doubted this would be anything so soon(less than two weeks) after treatment. I pray he is right.
April 21, 2009 Beginning the end
Monday.
I walk back into the oncology waiting room beaming at my husband. "I'm done!" After 10 months, it seems somehow strange to have reached the end of treatment. This long hard journey has come to an end. How different the world looks on this side of the mointain. No doubtI will spend the next 10 months recalling the ups and downs of this path, what I have learned about life, what I have learned about God.
The skin across my chest is bright red and feels sore and tight like the Jamaiican sunburn I was promised. We had a lovely week-end, staying once again at a friend's home where our daughter and son-in-law joined us. It was a great time to begin to put this year behind us and look to the future and the myriad of wonderful possibilities of life.
Last Thursday.
I see Dr. Kato for blood work and find out the next step - which little daily pill I will spend the next five years on. He prescribes Femara, an 'aromatase inhibitor' used to prevent the absorption of estrogen by cancer cells. He gives me a one month supply, $300 worth. He has seemed overworked and distracted the last few visits. He says my blood work is perfect and dismissively tells me to come back in a month. I don't leave so easily. I have a question. I ask if he recommends anything to deal with the bone loss caused by Femara such as an infusion like Boniva(the one Sally Fields advertises). He nods his head and says "Yes, that's a good idea." When I see him next month he'll give me Zometa by IV.
"Sure glad I came up with that idea," I say to Shoyei as we drive away. I've heard I have to be my "own advocate" but my own doctor too? It depresses me to lose confidence in Dr. Kato. On the way home I wonder aloud why he hasn't recommended a bone density test before I get started. I determine to find out tomorrow.
Friday
I call Dr. Kato. "I was just wondering if Dr. Kato thinks I should have a bone density test before I start on the Femara?" I ask his receptionist. She checks and calls me back, he said: Yes, I should have a bone density test, he'll have someone call me to schedule it. Wow! I'm full of good ideas and I barely got Cs in science! I am feeling very unprotected by my doctor.
Later that day I see Dr. Kuske for my last weekly check-up to see how I am faring with the burn and fatigue and all. My husband joins us. Dr. Kuske spends our entire visit on his Blackberry. He says he's waiting for a call from a doctor but then gets a text from a different doctor. Dr. Kato is "asking whether I can see a patient at 6:15! On Friday night! We have theater tickets!" he states in mock outrage. We nod our heads in sympathy at this unrealistic request. I glance at my husband's bemused expression watching the doctor as his thumbs fly over the keyboard in response. He absently asks how my skin is doing and as I answer he is staring at his vibrating PDA and reading another message. "Oh good. It can wait til Monday." He holds up the screen waiving it for my husband and me to read like show and tell in front of a class of gradeschool children. He then returns to his texting and, with eyes on his thumbwork, tells me what I can expect as far as my skin healing. We leave feeling udderly neglected, pun intended. Totally let down by the experts. We take the week-end to get over it and don't even speak of it until the next night when our collective shock is wearing off and the retelling of it solidifies our right to be outraged. Our mission is clear. We will become expert advocates. I wonder sadly about those who are too ill or too frail to be advocates for themselves.
So it is over. The biopsy- the port implant- the chemo - the burned hands - the mastectomy - more chemo - Neulasta - bone pain -expander rejection - port removal and radiation. It is all over. The calls of concern, the prayers for healing, the doting care of my husband, the meals, the cards, the flowers and gifts, the host of new friends - these are over too but they are the vestiges of cancer I will cherish. That is why, when asked about my journey, I get a wistful smile and think on how loved and cared for I have felt by my wealth of friends and family. I am glad I walked this path. Even when I was alone, I was never "alone". Even when it was hard, it was never more than I could bear for others bore it with me.
Now I face the trial of not fixating on every ache and pain and wondering if it's back. Yet I know that even if it comes back, it will be less frightening. So many women have touched my life over these many weeks. It's amazing what two women can share in ten minutes. We exchange emails, each of us a bit desperate for more time to share, making ten-minute friends as we sit knee to knee, braless and gowned. The last new friend I make is Gerri, a beautiful woman with clear blue eyes and thick white hair which she wears in a graceful pageboy. She is on her second bout of breast cancer. Her sweetness and peace inspire me. We speak fast and excitedly sharing our lives, knowing the time is brief between patients. We share our love for Jesus and rejoice for each other. We squeeze hands and hug as if we've known each other all our lives. It's a fitting end to my experience and I leave the same way I entered, smiling, with joy in my heart, with peace in my soul. A new beginning.
I walk back into the oncology waiting room beaming at my husband. "I'm done!" After 10 months, it seems somehow strange to have reached the end of treatment. This long hard journey has come to an end. How different the world looks on this side of the mointain. No doubtI will spend the next 10 months recalling the ups and downs of this path, what I have learned about life, what I have learned about God.
The skin across my chest is bright red and feels sore and tight like the Jamaiican sunburn I was promised. We had a lovely week-end, staying once again at a friend's home where our daughter and son-in-law joined us. It was a great time to begin to put this year behind us and look to the future and the myriad of wonderful possibilities of life.
Last Thursday.
I see Dr. Kato for blood work and find out the next step - which little daily pill I will spend the next five years on. He prescribes Femara, an 'aromatase inhibitor' used to prevent the absorption of estrogen by cancer cells. He gives me a one month supply, $300 worth. He has seemed overworked and distracted the last few visits. He says my blood work is perfect and dismissively tells me to come back in a month. I don't leave so easily. I have a question. I ask if he recommends anything to deal with the bone loss caused by Femara such as an infusion like Boniva(the one Sally Fields advertises). He nods his head and says "Yes, that's a good idea." When I see him next month he'll give me Zometa by IV.
"Sure glad I came up with that idea," I say to Shoyei as we drive away. I've heard I have to be my "own advocate" but my own doctor too? It depresses me to lose confidence in Dr. Kato. On the way home I wonder aloud why he hasn't recommended a bone density test before I get started. I determine to find out tomorrow.
Friday
I call Dr. Kato. "I was just wondering if Dr. Kato thinks I should have a bone density test before I start on the Femara?" I ask his receptionist. She checks and calls me back, he said: Yes, I should have a bone density test, he'll have someone call me to schedule it. Wow! I'm full of good ideas and I barely got Cs in science! I am feeling very unprotected by my doctor.
Later that day I see Dr. Kuske for my last weekly check-up to see how I am faring with the burn and fatigue and all. My husband joins us. Dr. Kuske spends our entire visit on his Blackberry. He says he's waiting for a call from a doctor but then gets a text from a different doctor. Dr. Kato is "asking whether I can see a patient at 6:15! On Friday night! We have theater tickets!" he states in mock outrage. We nod our heads in sympathy at this unrealistic request. I glance at my husband's bemused expression watching the doctor as his thumbs fly over the keyboard in response. He absently asks how my skin is doing and as I answer he is staring at his vibrating PDA and reading another message. "Oh good. It can wait til Monday." He holds up the screen waiving it for my husband and me to read like show and tell in front of a class of gradeschool children. He then returns to his texting and, with eyes on his thumbwork, tells me what I can expect as far as my skin healing. We leave feeling udderly neglected, pun intended. Totally let down by the experts. We take the week-end to get over it and don't even speak of it until the next night when our collective shock is wearing off and the retelling of it solidifies our right to be outraged. Our mission is clear. We will become expert advocates. I wonder sadly about those who are too ill or too frail to be advocates for themselves.
So it is over. The biopsy- the port implant- the chemo - the burned hands - the mastectomy - more chemo - Neulasta - bone pain -expander rejection - port removal and radiation. It is all over. The calls of concern, the prayers for healing, the doting care of my husband, the meals, the cards, the flowers and gifts, the host of new friends - these are over too but they are the vestiges of cancer I will cherish. That is why, when asked about my journey, I get a wistful smile and think on how loved and cared for I have felt by my wealth of friends and family. I am glad I walked this path. Even when I was alone, I was never "alone". Even when it was hard, it was never more than I could bear for others bore it with me.
Now I face the trial of not fixating on every ache and pain and wondering if it's back. Yet I know that even if it comes back, it will be less frightening. So many women have touched my life over these many weeks. It's amazing what two women can share in ten minutes. We exchange emails, each of us a bit desperate for more time to share, making ten-minute friends as we sit knee to knee, braless and gowned. The last new friend I make is Gerri, a beautiful woman with clear blue eyes and thick white hair which she wears in a graceful pageboy. She is on her second bout of breast cancer. Her sweetness and peace inspire me. We speak fast and excitedly sharing our lives, knowing the time is brief between patients. We share our love for Jesus and rejoice for each other. We squeeze hands and hug as if we've known each other all our lives. It's a fitting end to my experience and I leave the same way I entered, smiling, with joy in my heart, with peace in my soul. A new beginning.
Aptil 9, 2009 Only My Hairdresser Knows
My hair is white. My post chemotherapy hair is white like snow. It is two inches long, soft and curly. I am shocked by its absolute whiteness, like the wooly head of God I think. It looks like I sudsed up a lather of shampoo and piled it on top of my head, a kid in a tub. I wonder how it would look grown to my preferred length. Should I leave it white?
A few years ago a friend of mine showed up with a great new haircut. When pressed, she admitted it was a wig. "No way," I said. "I want one!" She went with me to try on wigs. One looked too young. The other too old, the other too floozyish. I'd almost given up hope until I tried the "right" one. It was great! On the occasional bad hair day or vacationing at the beach, my wig was the perfect answer. I liked it so much I took it to my hairdresser to copy so eventually you couldn't tell whether I was wearing a wig or not. When chemo finally took my hair, I was ready and my public none-the-wiser.
There is a vast difference between wearing a wig to cover a bad hair day and wearing one to cover up baldness or strangely colored regrowth. The first being optional. Wig-wearing soon grows old and I like nothing better than arriving home at the end of the day and tossing my wig on the bed. My husband says he doesn't mind but sometimes I leave it on through dinner to let him see me as his old PRE-cancer girl.
He makes jokes but I can't help but wonder what it's really like for him to have this little flat mangle-chested woman running around impostering as his wife. He must miss the old girl. I do.
"I'm too young for white hair," I tell my daughter. "You're 58!" She replies as if to say "who-are-you-kidding"? I remember her favorite nursery poem by the slightly deranged Lewis Carrol:
You are old Father William, I said to the man, and have grown most incredibly fat. Yet you did a back sommersault in at the door. Tell me what was the meaning of that?
I don't feel like a senior citizen quite yet. That clinches it! Redken, here I come.
A few years ago a friend of mine showed up with a great new haircut. When pressed, she admitted it was a wig. "No way," I said. "I want one!" She went with me to try on wigs. One looked too young. The other too old, the other too floozyish. I'd almost given up hope until I tried the "right" one. It was great! On the occasional bad hair day or vacationing at the beach, my wig was the perfect answer. I liked it so much I took it to my hairdresser to copy so eventually you couldn't tell whether I was wearing a wig or not. When chemo finally took my hair, I was ready and my public none-the-wiser.
There is a vast difference between wearing a wig to cover a bad hair day and wearing one to cover up baldness or strangely colored regrowth. The first being optional. Wig-wearing soon grows old and I like nothing better than arriving home at the end of the day and tossing my wig on the bed. My husband says he doesn't mind but sometimes I leave it on through dinner to let him see me as his old PRE-cancer girl.
He makes jokes but I can't help but wonder what it's really like for him to have this little flat mangle-chested woman running around impostering as his wife. He must miss the old girl. I do.
"I'm too young for white hair," I tell my daughter. "You're 58!" She replies as if to say "who-are-you-kidding"? I remember her favorite nursery poem by the slightly deranged Lewis Carrol:
You are old Father William, I said to the man, and have grown most incredibly fat. Yet you did a back sommersault in at the door. Tell me what was the meaning of that?
I don't feel like a senior citizen quite yet. That clinches it! Redken, here I come.
Persevering in Prayer
My daughter asked me and a few of her friends to share what significant thing I had seen God do in 2009. This is what I sent her:
What God did in 2009 required a bit of background, so please bear with me.
It was Spring 2008. My son was about to graduate from college and asked if he could live with us for the summer to save money for Law School which he would start in the Fall. I was excited at the prospect. It had been six years since he'd lived with us. I nervously approached my husband.
"NO!" He yelled. "He can NOT stay with us. We can't afford it right now! I'm not going to work my tail off, feeding him while he lounges around!" I tried to explain that he hoped to find work. I knew it wasn't the real reason our son wasn't welcome in our home. Hadn't I prayed for 27 years for his father to love him and treat him as the only precious son he was?
My husband is 15 years older than me. He's been married twice before, fathering six daughters by the first wife. He wasn't much of a father to those sweet little girls. He didn't really know how and an acrimonious divorce pretty much shut him out of their lives. So despite his reluctance to father more children, I expected the arrival of his son to make a difference. It didn't. He was alternately kind, loving and fun and then indifferent and harsh. I worried about the confusion this behavior would cause my young son and the daughter that followed.
"Fathers, do not exasperate your children, so that they will not lose heart." These word from Colossians 3:21, jumped off the page at me when I first read them. But I prayed. Oh how prayed! Over and over again through the years, I prayed that our Heavenly Father would protect my children from their father's conflicting signals.
I had considered leaving him more than once, to protect them. Finally the day came when he'd gone too far, humiliating my eighteen-year-old son in front of a friend and then storming off. My son walked quietly out of the house. He called me from a friend's and said "Mom, I'm not coming home." "I understand," I said. "No, Mom" he said, "I'm not ever coming home again." My heart cried out, feeling his pain, roiling with my own. He was eighteen but he was still in high school. It was still my responsibility to give him a home. I was a successful business woman, I would buy another house and make a real home for my children.
"Then I'm going, too," I told him, my mind scrambling at the logistics of moving out. I'd seen a home that day that would work. So I packed up and we left.
My husband was full of grief and pleas and promises but I'd had it. Within days, however, the Lord's voice was getting too loud to ignore. Divorce was not an option. I told my husband, this separation was for a season. He wrote beautiful letters to each of us, asking forgiveness and pledging his love.
My daughter began rebelling, talking back to me, hanging out with a bad crowd. One night she walked out the door without a word. I called my husband and the police. Both came right over and she showed up around midnight. I was clearly losing control. "Why don't we just go back home," she shouted at me on Mother's Day. So we did.
My son packed his car and headed off to college and my daughter and I moved back home. I told my husband, we were coming back, under one condition. That Jesus was coming with us and that I could read my bible without insults from him. He heartily agreed.
For a while, it was wonderful. He even came to church with us. But slowly he slipped back into old ways and I cried out to God, "Why? Why did you make me come back?"
But I knew the answer. My husband needed us, even if he treated us badly. So I promised God I would show my husband more of Christ.
I began to study more and grow deeper in the Word. My daughter continued to cause us grief and worry which finally helped unite us as parents but even as she came around, returning wholeheartedly to the Lord, my husband gave and withdrew love from her unpredictably. My heart's cry continued its plea to change my husband's heart - to give me the loving home life I yearned for.
Throughout the years I took the kids on trips to visit friends and family. My husband had no desire to join us. He tolerated limited interaction with the children. The vacations he planned seldom included them. I went to school events and extracurricular events alone.
I felt like a single parent. As my children left home I feared they would never want to return. But I continued to pray for a miracle to change my husband's heart.
That day my husband refused to allow our son to stay with us, something snapped in me. I felt rage and fury as I had never felt before. A home that would not welcome my children, was no home. I had no home, I told myself. It hit me that I would never have that home this side of heaven. I cried out to God. And suddenly there He was before me. Jesus was holding out a hand to me asking me to hand over my hopes and dreams. Give up my ideas of happy family holidays and grandchildren running around the house. And I did. I let go of every hopeful dream. Peace flooded me as I accepted Jesus as my all. Jesus as sufficient. The hatred I felt for my husband moments before dissolved into forgiving love. Jesus was my comfort and I could rely on Him to comfort my children.
Soon after this release, He comforted me with the promise, "I will restore to you the years the locust has eaten away."(Joel 2:25) And I knew He would give me something better than the little white picket fence dream I'd clung to for so many years. I knew He loved me that much.
The next month I was diagnosed with breast cancer. How would God use this, I wondered. My husband was shaken at the fear of losing me. He hovered over me with love and concern and showed me a man I had not seen before. For the first time in our married life, I saw the depth of his love for me. The year that followed I fell in love with him again and we held tightly onto each other through surgeries, chemo, radiation and an uncertain future together. Our children became an unexpected comfort as they demonstrated the grace of God to him.
We got through that difficult year and I like to tell people I got cancer and a new husband out of it. But loving as he was to me, he held to his atheistic beliefs and I wondered if that could ever change.
During time spent with our wonderful son-in-law I found new hope as I saw my husband form a deep affection for him. Yet I felt jealous for our son with whom there still seemed to be a disconnect. So as Christmas '09 approached, I employed legions of prayer warriors at the wonderful church I attend to pray for a special, peaceful and even Joyous time with our son who would be home for the holidays from school. And please God for a connection between father and son.
It happened so subtly beginning with our daughter's email to her Dad suggesting he attend Christmas Eve services with us. She attached an article entitled "Atheism, Rituals and Holidays" encouraging the non-believer to participate in celebrations to promote family unity. He agreed. Then, rather than retiring to his office immediately after meals, he stayed to enjoy the company of our children. I was very busy with work during the holidays, much to my frustration, but I quickly saw these times as divine appointments between father and son. My husband was spending every available minute with him, offering "helpful" advice and concern. The holidays passed without a harsh word, a miracle in our family.
Then it happened. The day we watched our son pack up to begin the long drive cross country, my husband and I stood together seeing him off with hugs and travel blessings, I saw it! The answer to 28 years of prayer! My husband's eyes shone with tears at seeing him go! He even moped around a few days, complaining of the emptiness of the bedroom, admitting he missed Danny and I rejoiced in the faithfulness of God as I saw him begin to "restore the years..."
What did I learn in 2009? When God's people pray, He is faithful. When I humbled myself and asked for prayer support of faithful warriors, the battle was won there. Even the unanswered portions for my husband's salvation and for him to express his love to his son were answered "yes" although I have yet to "see" it. God's timing is perfect and I am so glad I've persevered in my marriage of 31 years.
May this bless you and encourage you to never give up but know He hears your prayers. And when "two or more are gathered," those prayers are empowered by Christ Himself.
What God did in 2009 required a bit of background, so please bear with me.
It was Spring 2008. My son was about to graduate from college and asked if he could live with us for the summer to save money for Law School which he would start in the Fall. I was excited at the prospect. It had been six years since he'd lived with us. I nervously approached my husband.
"NO!" He yelled. "He can NOT stay with us. We can't afford it right now! I'm not going to work my tail off, feeding him while he lounges around!" I tried to explain that he hoped to find work. I knew it wasn't the real reason our son wasn't welcome in our home. Hadn't I prayed for 27 years for his father to love him and treat him as the only precious son he was?
My husband is 15 years older than me. He's been married twice before, fathering six daughters by the first wife. He wasn't much of a father to those sweet little girls. He didn't really know how and an acrimonious divorce pretty much shut him out of their lives. So despite his reluctance to father more children, I expected the arrival of his son to make a difference. It didn't. He was alternately kind, loving and fun and then indifferent and harsh. I worried about the confusion this behavior would cause my young son and the daughter that followed.
"Fathers, do not exasperate your children, so that they will not lose heart." These word from Colossians 3:21, jumped off the page at me when I first read them. But I prayed. Oh how prayed! Over and over again through the years, I prayed that our Heavenly Father would protect my children from their father's conflicting signals.
I had considered leaving him more than once, to protect them. Finally the day came when he'd gone too far, humiliating my eighteen-year-old son in front of a friend and then storming off. My son walked quietly out of the house. He called me from a friend's and said "Mom, I'm not coming home." "I understand," I said. "No, Mom" he said, "I'm not ever coming home again." My heart cried out, feeling his pain, roiling with my own. He was eighteen but he was still in high school. It was still my responsibility to give him a home. I was a successful business woman, I would buy another house and make a real home for my children.
"Then I'm going, too," I told him, my mind scrambling at the logistics of moving out. I'd seen a home that day that would work. So I packed up and we left.
My husband was full of grief and pleas and promises but I'd had it. Within days, however, the Lord's voice was getting too loud to ignore. Divorce was not an option. I told my husband, this separation was for a season. He wrote beautiful letters to each of us, asking forgiveness and pledging his love.
My daughter began rebelling, talking back to me, hanging out with a bad crowd. One night she walked out the door without a word. I called my husband and the police. Both came right over and she showed up around midnight. I was clearly losing control. "Why don't we just go back home," she shouted at me on Mother's Day. So we did.
My son packed his car and headed off to college and my daughter and I moved back home. I told my husband, we were coming back, under one condition. That Jesus was coming with us and that I could read my bible without insults from him. He heartily agreed.
For a while, it was wonderful. He even came to church with us. But slowly he slipped back into old ways and I cried out to God, "Why? Why did you make me come back?"
But I knew the answer. My husband needed us, even if he treated us badly. So I promised God I would show my husband more of Christ.
I began to study more and grow deeper in the Word. My daughter continued to cause us grief and worry which finally helped unite us as parents but even as she came around, returning wholeheartedly to the Lord, my husband gave and withdrew love from her unpredictably. My heart's cry continued its plea to change my husband's heart - to give me the loving home life I yearned for.
Throughout the years I took the kids on trips to visit friends and family. My husband had no desire to join us. He tolerated limited interaction with the children. The vacations he planned seldom included them. I went to school events and extracurricular events alone.
I felt like a single parent. As my children left home I feared they would never want to return. But I continued to pray for a miracle to change my husband's heart.
That day my husband refused to allow our son to stay with us, something snapped in me. I felt rage and fury as I had never felt before. A home that would not welcome my children, was no home. I had no home, I told myself. It hit me that I would never have that home this side of heaven. I cried out to God. And suddenly there He was before me. Jesus was holding out a hand to me asking me to hand over my hopes and dreams. Give up my ideas of happy family holidays and grandchildren running around the house. And I did. I let go of every hopeful dream. Peace flooded me as I accepted Jesus as my all. Jesus as sufficient. The hatred I felt for my husband moments before dissolved into forgiving love. Jesus was my comfort and I could rely on Him to comfort my children.
Soon after this release, He comforted me with the promise, "I will restore to you the years the locust has eaten away."(Joel 2:25) And I knew He would give me something better than the little white picket fence dream I'd clung to for so many years. I knew He loved me that much.
The next month I was diagnosed with breast cancer. How would God use this, I wondered. My husband was shaken at the fear of losing me. He hovered over me with love and concern and showed me a man I had not seen before. For the first time in our married life, I saw the depth of his love for me. The year that followed I fell in love with him again and we held tightly onto each other through surgeries, chemo, radiation and an uncertain future together. Our children became an unexpected comfort as they demonstrated the grace of God to him.
We got through that difficult year and I like to tell people I got cancer and a new husband out of it. But loving as he was to me, he held to his atheistic beliefs and I wondered if that could ever change.
During time spent with our wonderful son-in-law I found new hope as I saw my husband form a deep affection for him. Yet I felt jealous for our son with whom there still seemed to be a disconnect. So as Christmas '09 approached, I employed legions of prayer warriors at the wonderful church I attend to pray for a special, peaceful and even Joyous time with our son who would be home for the holidays from school. And please God for a connection between father and son.
It happened so subtly beginning with our daughter's email to her Dad suggesting he attend Christmas Eve services with us. She attached an article entitled "Atheism, Rituals and Holidays" encouraging the non-believer to participate in celebrations to promote family unity. He agreed. Then, rather than retiring to his office immediately after meals, he stayed to enjoy the company of our children. I was very busy with work during the holidays, much to my frustration, but I quickly saw these times as divine appointments between father and son. My husband was spending every available minute with him, offering "helpful" advice and concern. The holidays passed without a harsh word, a miracle in our family.
Then it happened. The day we watched our son pack up to begin the long drive cross country, my husband and I stood together seeing him off with hugs and travel blessings, I saw it! The answer to 28 years of prayer! My husband's eyes shone with tears at seeing him go! He even moped around a few days, complaining of the emptiness of the bedroom, admitting he missed Danny and I rejoiced in the faithfulness of God as I saw him begin to "restore the years..."
What did I learn in 2009? When God's people pray, He is faithful. When I humbled myself and asked for prayer support of faithful warriors, the battle was won there. Even the unanswered portions for my husband's salvation and for him to express his love to his son were answered "yes" although I have yet to "see" it. God's timing is perfect and I am so glad I've persevered in my marriage of 31 years.
May this bless you and encourage you to never give up but know He hears your prayers. And when "two or more are gathered," those prayers are empowered by Christ Himself.
For One Who's Gone
She was the graceful, tenderhearted woman I met near the end of my radiation. We only crossed paths twice but we bonded at the first meeting, we are sisters-in-Christ. Her breast cancer had returned and she was facing a second round of treatment. We sat side-by-side, starched gowns covering our nakedness, exposing our vulnerability. Silver curls haloed a thoughtful face as she confessed an earnest desire to live to watch her grandchildren's lives unfold.
She called me a while back and shared her frustration with our doctors - we shared Dr. Kato and Kuske. And she told me how tired she felt. The battle was taking its toll. Last night I received an email from her daughter letting me know Gerri had passed on October 26th.
It hit us hard, my husband and I. He'd met her and her husband in the waiting room. He'd noticed the stricken face, the lost gaze of a husband facing the fear recurrence brings. She is the first of our acquaintances on this road of cancer to have succombed. It is sobering.
I fell asleep last night at peace, grateful for each day and especially for the new man my husband has become. He, I am sorry to say, could not sleep. He was feeling "emotional" he told me. I know it is hard for him not to worry. We have seen my brother's cancer recur five times. It is a fearful thing. Yet he, Jim, is still going strong.
I remember meeting Gerri the first time, how we rejoiced in seeing Christ in each other. A great Hope in a hard time. We briefly poured comfort into each other and went on our ways, the stronger for it. I remember, at the time, feeling grateful for her soft eyes and sweet face. She gave me a bit of herself to take on my journey and I am grateful to have met her, more grateful that we shall meet again.
She called me a while back and shared her frustration with our doctors - we shared Dr. Kato and Kuske. And she told me how tired she felt. The battle was taking its toll. Last night I received an email from her daughter letting me know Gerri had passed on October 26th.
It hit us hard, my husband and I. He'd met her and her husband in the waiting room. He'd noticed the stricken face, the lost gaze of a husband facing the fear recurrence brings. She is the first of our acquaintances on this road of cancer to have succombed. It is sobering.
I fell asleep last night at peace, grateful for each day and especially for the new man my husband has become. He, I am sorry to say, could not sleep. He was feeling "emotional" he told me. I know it is hard for him not to worry. We have seen my brother's cancer recur five times. It is a fearful thing. Yet he, Jim, is still going strong.
I remember meeting Gerri the first time, how we rejoiced in seeing Christ in each other. A great Hope in a hard time. We briefly poured comfort into each other and went on our ways, the stronger for it. I remember, at the time, feeling grateful for her soft eyes and sweet face. She gave me a bit of herself to take on my journey and I am grateful to have met her, more grateful that we shall meet again.
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