June 8, 2009
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.
Tuesday, June 9, 2009
Friday, May 22, 2009
May 22, 2009Shoyei 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.
Saturday, May 16, 2009
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:
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:
Monday, May 11, 2009
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.
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.
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.
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.
Tuesday, April 21, 2009
April 20, 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 mountain. No doubt I 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 Jamaican 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's office. "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 grade school children. He then returns to his texting and, with eyes on his thumb work, 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.
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 mountain. No doubt I 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 Jamaican 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's office. "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 grade school children. He then returns to his texting and, with eyes on his thumb work, 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.
Friday, April 17, 2009
April 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 woolly 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 imposing 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 somersault 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.
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 woolly 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 imposing 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 somersault 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.
Tuesday, April 14, 2009
April 7, 2009 Today I let myself down.
We left Prescott as usual, early enough to avoid traffic, grab a bite to eat and arrive early for my 6:15 radiation therapy appointment. We never want to be late and mess up every one's schedule.
When I walked into the waiting room there was a rather frazzled looking woman sitting there alone. I'd seen 5:45 Carol go in so I walked on back and changed into a gown and sat down to wait. On time for a change I think to myself. The woman from the waiting room shows up and changes into a gown. "Hi!" I say flashing my friendly grin. "Are you new?" "I'm usually here in the daytime," she states jerking her head at me and acting very annoyed. She opens a book and resumes marking the pages with her red pen. "What time is your appointment?" I try again. But she dismisses me with a flick of her wrist in my direction, mumbling something about needing to see the doctor "and everything".
6:00 April shows up with her usual smile, gets changed and sits down with me. We catch up a bit. Carol returns complaining she feels like a crispy critter so we discuss skin regimens. No-appointment 'Sally' shakes her long red wig and turns her body away from us, obviously annoyed by all this friendly chatter. We three queens roll our eyes at each other as if to say "who is she?" Carol leaves and April is called in.
A few minutes later, my miserable roommate catches the attention of a technician and asks how much longer. "I've got children at home," she adds. I picture a couple of grade schoolers fending for themselves eating sugared cereal for dinner. "I'll check," the techie says and returns moments later. "10 minutes," she says.
I begin to seethe. It appears I am being bumped by Miss don't-talk-to-me-you-bother-me. It's not right, I say to myself. The 6:15-right-after-April is my time slot. We left home at 2:45 just to be here with room to spare so I don't hold anyone up! She takes a call from her child and makes sure she's doing her Physics homework. Not grade schoolers, I surmise.
I happen to know 6:30 Toby is through with her treatment. Let her have that spot. Right AFTER ME, I think. But no, April returns and "Adrienne" is called. "You're not treating me next," ask? No, says the technician. Adrienne is next. Walking from the room Adrienne spins her head back at me looking not unlike Linda Blair in the Exorcist. "I've waited 2 hours" she spits. "And I have a two hour drive home," I say to her but she's around the corner and I'm left to fume at the unfairness of it all.
I storm out into the waiting room to complain to my husband explaining how this woman, who has missed her morning appointment, has just squeezed me out. He patiently rubs my arm smoothing my rumpled feathers. I'm spewing on about the scheduling in this joint and all the waiting I've done and how dare they give her my time just because she missed her time. Then I add in all honesty, I wouldn't be feeling like this if she hadn't been so cold and rude to me. I haven't yet admitted that I'm behaving in a horribly UNgracious manner, shamefully inflexible and inexcusably witchy.
When it's my turn, there is no apology for keeping ME waiting. I plan to give them the cold shoulder which is actually literal in this meat locker temperature of a treatment room. But I don't last. I make an effort to be friendly.
WHAT ABOUT ME? WHAT ABOUT ME? At once, I'm disgusted and disappointed in my own behavior. What about you Kathleen? God forgive me. What an ungracious shrew I've been. I am so sorry I tell Him. How can I pass the big test of accepting the burden of cancer and fail this little one? You've never liked people who butt in line, I rationalize. Maybe it's my chemo brain fog, I justify. Or maybe it's my sin nature. Please forgive me, I attempt to telepathically say to Adrienne. Perhaps she is a single Mom under tremendous pressure to work, raise her children and deal with cancer.
Thank You, Lord, for forgiveness. Thank You for a fresh chance to do better next time.
We left Prescott as usual, early enough to avoid traffic, grab a bite to eat and arrive early for my 6:15 radiation therapy appointment. We never want to be late and mess up every one's schedule.
When I walked into the waiting room there was a rather frazzled looking woman sitting there alone. I'd seen 5:45 Carol go in so I walked on back and changed into a gown and sat down to wait. On time for a change I think to myself. The woman from the waiting room shows up and changes into a gown. "Hi!" I say flashing my friendly grin. "Are you new?" "I'm usually here in the daytime," she states jerking her head at me and acting very annoyed. She opens a book and resumes marking the pages with her red pen. "What time is your appointment?" I try again. But she dismisses me with a flick of her wrist in my direction, mumbling something about needing to see the doctor "and everything".
6:00 April shows up with her usual smile, gets changed and sits down with me. We catch up a bit. Carol returns complaining she feels like a crispy critter so we discuss skin regimens. No-appointment 'Sally' shakes her long red wig and turns her body away from us, obviously annoyed by all this friendly chatter. We three queens roll our eyes at each other as if to say "who is she?" Carol leaves and April is called in.
A few minutes later, my miserable roommate catches the attention of a technician and asks how much longer. "I've got children at home," she adds. I picture a couple of grade schoolers fending for themselves eating sugared cereal for dinner. "I'll check," the techie says and returns moments later. "10 minutes," she says.
I begin to seethe. It appears I am being bumped by Miss don't-talk-to-me-you-bother-me. It's not right, I say to myself. The 6:15-right-after-April is my time slot. We left home at 2:45 just to be here with room to spare so I don't hold anyone up! She takes a call from her child and makes sure she's doing her Physics homework. Not grade schoolers, I surmise.
I happen to know 6:30 Toby is through with her treatment. Let her have that spot. Right AFTER ME, I think. But no, April returns and "Adrienne" is called. "You're not treating me next," ask? No, says the technician. Adrienne is next. Walking from the room Adrienne spins her head back at me looking not unlike Linda Blair in the Exorcist. "I've waited 2 hours" she spits. "And I have a two hour drive home," I say to her but she's around the corner and I'm left to fume at the unfairness of it all.
I storm out into the waiting room to complain to my husband explaining how this woman, who has missed her morning appointment, has just squeezed me out. He patiently rubs my arm smoothing my rumpled feathers. I'm spewing on about the scheduling in this joint and all the waiting I've done and how dare they give her my time just because she missed her time. Then I add in all honesty, I wouldn't be feeling like this if she hadn't been so cold and rude to me. I haven't yet admitted that I'm behaving in a horribly UNgracious manner, shamefully inflexible and inexcusably witchy.
When it's my turn, there is no apology for keeping ME waiting. I plan to give them the cold shoulder which is actually literal in this meat locker temperature of a treatment room. But I don't last. I make an effort to be friendly.
WHAT ABOUT ME? WHAT ABOUT ME? At once, I'm disgusted and disappointed in my own behavior. What about you Kathleen? God forgive me. What an ungracious shrew I've been. I am so sorry I tell Him. How can I pass the big test of accepting the burden of cancer and fail this little one? You've never liked people who butt in line, I rationalize. Maybe it's my chemo brain fog, I justify. Or maybe it's my sin nature. Please forgive me, I attempt to telepathically say to Adrienne. Perhaps she is a single Mom under tremendous pressure to work, raise her children and deal with cancer.
Thank You, Lord, for forgiveness. Thank You for a fresh chance to do better next time.
April 2, 2009 A Great Day
I am sitting on the back patio of a Sun City West home listening to a symphony of birds - quail, humming birds, doves, starlings - filling the branches of lush trees. The fragrance of orange trees fills the air. This is a senior community. I've never believed in the concept of the separation of age groups in such a permanent way. The idea of no children in the community depresses me. The seniors, I believe, need young people and the young people need seniors. The thought that the sound-of-the-city is ambulance sirens and oxygen-delivery trucks seems too horrible to contemplate. I would not however, I admit to myself, miss the boom boom of rap blaring from young people's cars, keeping beat to their raging hormones.
I'm surprised to hear a rowdy gathering a few patios away in this fenceless community. These older boys are laughing up a storm and they are actually listening to band music! I've never known anyone who listened to band music. I recognize the John Philip Souza piece I played for my son's first grade class. I was a volunteer art docent and even wore a borrowed band uniform to help illustrate the American parade painting I'd brought to share and inspire the boys and girls. We marched around the room with imaginary batons and instruments. Perhaps these are old friends sharing memories of high school band-playing days. I wonder if they're marching around their patio. The foliage is thick enough to conceal them.
The weather is glorious! It's not yet warm enough to drive everyone in to their air conditioned houses. A friend has given us the use of this beautiful home while I finish up the last half of my radiation. It is wonderful to have a place to rest, occasionally sparing us the daily 220 mile round trip drive. It is the first time since last summer I've felt this relaxed. Is there anything more wonderful than spending a day outdoors in perfect weather? There is even a gentle breeze stirring the trees.
This morning we drove for an hour trying to find a place for breakfast, shunning the long line at IHop. We finally found a golf course restaurant with a big "Breakfast served all day" banner stating "open to the public". Knowing golf course restaurants serve good fare at cheap prices, my husband pulled in at the insistence of our growling stomachs. We dined on yummy biscuits and gravy and bad coffee, and were grateful for both. There was a time when I would have insisted we drive farther and try to find the perfect little cafe but I've mellowed. It's a lot less stressful to go with the flow. Watching golfers come and go, we found ourselves dreaming of the day we'll be able to step back onto a golf course together. But either I wait for my new breasts or learn an new swing to fit my temporary body. My prosthetics breasts aren't exactly stationary. Besides, the muscle connecting my right chest to my arm isn't up to the contortions a back swing requires. We don't mention the added constraints our budget imposes. It's nice to dream. Last night's treatment was hard. There was a new tech and she wasn't able to position me as she needed to. My right arm fits in a two piece arm rest over my head. It was angled in a way that caused extreme discomfort and seemed to me to be different than usual. Now, I think to myself, I understand the torture of being drawn and quartered. My fifteen minute treatment went forty-five minutes and still failed to get the two xrays they wanted. She is sweet but I was frustrated and let my claustrophobia get to me when she abandoned me in the closed room way longer than I'm used to.
"Hello!" I call. "Anyone there?" "Helloooo! Allison!!!!" I sit up and discover I am four feet off the ground. I'd never realized the table I lay on lifted so high. This explains the smaller technicians straining to replace the tailored "lens" equipment and peering over the table to verify my tattoo points. By now, I am acutely aware of the other moves of this massive Varian Linear Accelerator specific to my treatment. I'm familiar with the beeping and whirring and buzzing sounds and red and green lights. How could I be unaware of my elevated state? I lay back and picture my sheet draped bed lifted by the telepathic thoughts of a magician. Chemo fog hasn't fully lifted, I conclude.
Turns out the technician was off getting advice on my case from the on-call doctor mysteriously squirreled away somewhere in this building. When she re enters she tells me we will give up trying for xrays tonight and hope my muscle relaxes for the next session. Apparently, it's not uncommon for muscles to tighten up from the radiation. She gave me some stretching exercises and I give some serious thought to skipping the next treatment.
I've decided what I am overhearing is a boisterous card party - a friendly game, I decide, with a wife supplying snacks and encouragement. I'm a hopeless eaves dropper. The sun lulls me to slumber. When, I wonder, is the last time I spent an entire afternoon outdoors in such a peaceful setting? What a great day! God is on His throne and all is right with the world.
I am sitting on the back patio of a Sun City West home listening to a symphony of birds - quail, humming birds, doves, starlings - filling the branches of lush trees. The fragrance of orange trees fills the air. This is a senior community. I've never believed in the concept of the separation of age groups in such a permanent way. The idea of no children in the community depresses me. The seniors, I believe, need young people and the young people need seniors. The thought that the sound-of-the-city is ambulance sirens and oxygen-delivery trucks seems too horrible to contemplate. I would not however, I admit to myself, miss the boom boom of rap blaring from young people's cars, keeping beat to their raging hormones.
I'm surprised to hear a rowdy gathering a few patios away in this fenceless community. These older boys are laughing up a storm and they are actually listening to band music! I've never known anyone who listened to band music. I recognize the John Philip Souza piece I played for my son's first grade class. I was a volunteer art docent and even wore a borrowed band uniform to help illustrate the American parade painting I'd brought to share and inspire the boys and girls. We marched around the room with imaginary batons and instruments. Perhaps these are old friends sharing memories of high school band-playing days. I wonder if they're marching around their patio. The foliage is thick enough to conceal them.
The weather is glorious! It's not yet warm enough to drive everyone in to their air conditioned houses. A friend has given us the use of this beautiful home while I finish up the last half of my radiation. It is wonderful to have a place to rest, occasionally sparing us the daily 220 mile round trip drive. It is the first time since last summer I've felt this relaxed. Is there anything more wonderful than spending a day outdoors in perfect weather? There is even a gentle breeze stirring the trees.
This morning we drove for an hour trying to find a place for breakfast, shunning the long line at IHop. We finally found a golf course restaurant with a big "Breakfast served all day" banner stating "open to the public". Knowing golf course restaurants serve good fare at cheap prices, my husband pulled in at the insistence of our growling stomachs. We dined on yummy biscuits and gravy and bad coffee, and were grateful for both. There was a time when I would have insisted we drive farther and try to find the perfect little cafe but I've mellowed. It's a lot less stressful to go with the flow. Watching golfers come and go, we found ourselves dreaming of the day we'll be able to step back onto a golf course together. But either I wait for my new breasts or learn an new swing to fit my temporary body. My prosthetics breasts aren't exactly stationary. Besides, the muscle connecting my right chest to my arm isn't up to the contortions a back swing requires. We don't mention the added constraints our budget imposes. It's nice to dream. Last night's treatment was hard. There was a new tech and she wasn't able to position me as she needed to. My right arm fits in a two piece arm rest over my head. It was angled in a way that caused extreme discomfort and seemed to me to be different than usual. Now, I think to myself, I understand the torture of being drawn and quartered. My fifteen minute treatment went forty-five minutes and still failed to get the two xrays they wanted. She is sweet but I was frustrated and let my claustrophobia get to me when she abandoned me in the closed room way longer than I'm used to.
"Hello!" I call. "Anyone there?" "Helloooo! Allison!!!!" I sit up and discover I am four feet off the ground. I'd never realized the table I lay on lifted so high. This explains the smaller technicians straining to replace the tailored "lens" equipment and peering over the table to verify my tattoo points. By now, I am acutely aware of the other moves of this massive Varian Linear Accelerator specific to my treatment. I'm familiar with the beeping and whirring and buzzing sounds and red and green lights. How could I be unaware of my elevated state? I lay back and picture my sheet draped bed lifted by the telepathic thoughts of a magician. Chemo fog hasn't fully lifted, I conclude.
Turns out the technician was off getting advice on my case from the on-call doctor mysteriously squirreled away somewhere in this building. When she re enters she tells me we will give up trying for xrays tonight and hope my muscle relaxes for the next session. Apparently, it's not uncommon for muscles to tighten up from the radiation. She gave me some stretching exercises and I give some serious thought to skipping the next treatment.
I've decided what I am overhearing is a boisterous card party - a friendly game, I decide, with a wife supplying snacks and encouragement. I'm a hopeless eaves dropper. The sun lulls me to slumber. When, I wonder, is the last time I spent an entire afternoon outdoors in such a peaceful setting? What a great day! God is on His throne and all is right with the world.
March 21, 2009 A Band of Sisters
Every evening, five days a week I climb onto a narrow sheet-draped table and subject my right torso to four separate beams of radiation angled just so to attack any remnants of breast cancer lurking in corners. By the third day it becomes old hat.
We arrive at 5:45PM for my 6:15PM appointment. We are very glad for this time slot which allows us to work until 2ish then drive to Phoenix, grab something to eat, get treated and head back.
Every few days they seem to get backed up and I've waited as long as an hour and a half. The back up of back-to-back patients affords me the opportunity to meet a few more patients aka "victims" or "survivors". No one complains about the back-up. We are comforted by our sheer numbers and by the chance to compare pains and burns and skin care remedies.
When I first meet 6 o'clock Margaret she has 3 remaining sessions. Her short blond wig sits slightly askew on her head in need of a good combing. She has strong opinions and a shrill delivery advising all to pursue Tau Chi, read Paul Coelho, ignore any diet restrictions and forgo the follow-up drug regime our doctors want us to do following radiation. She means well. She is a psychiatric nurse and speaks in short clipped statements. Margaret marches in for her turn at radiation before they call for her and returns ordering the next patient, "your turn. I don't wait for them to call me." The sign posted on the wall instructs us to wait until we are called. The ladies smile indulgently. Margaret's replacement, 6 o'clock April is here today - two 6 o'clock patients -no wonder we are late. April's smile is sweet. She seems scared, a nervous what-am-I-doing-here look on her face. She says she's fifty but I clearly see a young girl, striving for courage. 6:45 Toby is 40, with the body of a 20-year old, a big smile, false eye lashes and a cute long blond wig. She's dealing with her cancer, and trying to get back together with an old boyfriend. She's a candidate for the radiation seeds so I'm not quite sure why she's here.
5:45 Michelle is still here. She is the 35-year old mother of a 2 and 5 year old. She's Hers2 positive which I don't fully understand except that I know the miracle drug Herceptin promises great hope for her. She has a year of chemo with this drug beyond the common treatment most of us have had.
7:00 Monique is big, bold and sassy and it's instantly clear she has a heart of gold. 45, bald, in a baseball cap, she share that hers is inflammatory breast cancer, scary because this is the mother-of-all breast cancers, very fast-growing. It is evident that she has taken Toby under her wing as she advises her to forget the boyfriend and concentrate on getting well. She tells me later that her fiance, her faithful Robert who sits in the waiting room with my husband, has an inoperable brain tumor. They are strong together.
A patient returns from the treatment room and changes. She emerges with a question, "anyone here triple negative"? Michelle answers "No, but I have a friend who is. She's doing well". This statuesque 67-year old is just finishing her 3rd round of radiation after 3 rounds of chemo. After she leaves Michelle explains. If you test estrogen, progestrin or Hers2 positive - you're in luck. There are drugs to treat you. Triple negative - nothing works. Now I understand why they told me "you're estrogen and progestrin positive - that's a good thing".
My claim to fame seems to be that I'm the only one among us who elected a bilateral mastectomy. Most have had lumpectomies. I'm not unhappy with my decision.
6:30 Jan is 79. She is trim and spry. Her doctor in Wisconsin sent her here to see the best, Dr. Kuske. She was diagnosed three months after her husband of 60 years died. He, she tells me, was in a wheelchair from polio for 62 years. I do the math. "So you married him when he was already in a wheelchair?" I ask. "I'd knew lots of boys," she says. "He was the special one." It's obvious, so is she. She has been staying in her brother's guest casita. Every morning she gets up, goes into the house, grabs a cup of coffee and climbs into bed with her brother and sister-in-law, who are having their coffee, and they talk. Picturing this makes me smile. Jan is having her last treatment. 6 o'clock Margaret talked her out of the oral chemo follow-up. She says this treatment has taken the stuffing out of her.
I am warmly greeted by at least one of these women every day. I look around and realize I am in good company. I'm glad to be a part of this club I never wanted to join. My husband calls us a band of sisters.
Every evening, five days a week I climb onto a narrow sheet-draped table and subject my right torso to four separate beams of radiation angled just so to attack any remnants of breast cancer lurking in corners. By the third day it becomes old hat.
We arrive at 5:45PM for my 6:15PM appointment. We are very glad for this time slot which allows us to work until 2ish then drive to Phoenix, grab something to eat, get treated and head back.
Every few days they seem to get backed up and I've waited as long as an hour and a half. The back up of back-to-back patients affords me the opportunity to meet a few more patients aka "victims" or "survivors". No one complains about the back-up. We are comforted by our sheer numbers and by the chance to compare pains and burns and skin care remedies.
When I first meet 6 o'clock Margaret she has 3 remaining sessions. Her short blond wig sits slightly askew on her head in need of a good combing. She has strong opinions and a shrill delivery advising all to pursue Tau Chi, read Paul Coelho, ignore any diet restrictions and forgo the follow-up drug regime our doctors want us to do following radiation. She means well. She is a psychiatric nurse and speaks in short clipped statements. Margaret marches in for her turn at radiation before they call for her and returns ordering the next patient, "your turn. I don't wait for them to call me." The sign posted on the wall instructs us to wait until we are called. The ladies smile indulgently. Margaret's replacement, 6 o'clock April is here today - two 6 o'clock patients -no wonder we are late. April's smile is sweet. She seems scared, a nervous what-am-I-doing-here look on her face. She says she's fifty but I clearly see a young girl, striving for courage. 6:45 Toby is 40, with the body of a 20-year old, a big smile, false eye lashes and a cute long blond wig. She's dealing with her cancer, and trying to get back together with an old boyfriend. She's a candidate for the radiation seeds so I'm not quite sure why she's here.
5:45 Michelle is still here. She is the 35-year old mother of a 2 and 5 year old. She's Hers2 positive which I don't fully understand except that I know the miracle drug Herceptin promises great hope for her. She has a year of chemo with this drug beyond the common treatment most of us have had.
7:00 Monique is big, bold and sassy and it's instantly clear she has a heart of gold. 45, bald, in a baseball cap, she share that hers is inflammatory breast cancer, scary because this is the mother-of-all breast cancers, very fast-growing. It is evident that she has taken Toby under her wing as she advises her to forget the boyfriend and concentrate on getting well. She tells me later that her fiance, her faithful Robert who sits in the waiting room with my husband, has an inoperable brain tumor. They are strong together.
A patient returns from the treatment room and changes. She emerges with a question, "anyone here triple negative"? Michelle answers "No, but I have a friend who is. She's doing well". This statuesque 67-year old is just finishing her 3rd round of radiation after 3 rounds of chemo. After she leaves Michelle explains. If you test estrogen, progestrin or Hers2 positive - you're in luck. There are drugs to treat you. Triple negative - nothing works. Now I understand why they told me "you're estrogen and progestrin positive - that's a good thing".
My claim to fame seems to be that I'm the only one among us who elected a bilateral mastectomy. Most have had lumpectomies. I'm not unhappy with my decision.
6:30 Jan is 79. She is trim and spry. Her doctor in Wisconsin sent her here to see the best, Dr. Kuske. She was diagnosed three months after her husband of 60 years died. He, she tells me, was in a wheelchair from polio for 62 years. I do the math. "So you married him when he was already in a wheelchair?" I ask. "I'd knew lots of boys," she says. "He was the special one." It's obvious, so is she. She has been staying in her brother's guest casita. Every morning she gets up, goes into the house, grabs a cup of coffee and climbs into bed with her brother and sister-in-law, who are having their coffee, and they talk. Picturing this makes me smile. Jan is having her last treatment. 6 o'clock Margaret talked her out of the oral chemo follow-up. She says this treatment has taken the stuffing out of her.
I am warmly greeted by at least one of these women every day. I look around and realize I am in good company. I'm glad to be a part of this club I never wanted to join. My husband calls us a band of sisters.
Thursday, March 5, 2009
March 4, 2009. Dry run
My husband and I sit in the waiting room – waiting. I laugh as I ponder this. More accurately we are being kept waiting. We always arrive early so we won’t be late. Okay, now this is really amusing me. Finally, at 12:20, I am called for my 11;45 appointment for which we arrived at 11:30. “Are you ready?” the assistant asks. “Oh, I’ve been ready for a while,” I say a bit sarcastically and immediately I regret it noting her tired eyes. (Sarcasm – the cutting of flesh – I’m sorry). They open at 4AM.
My husband tries to accompany me. The front desk girl told us he could, but this nurse seems unsure, too tired to decide actually. After a long hesitation she reluctantly allows him to follow us. I’m led to the women’s dressing area to change and he takes a seat. A female patient returns from treatment, notes my husband’s presence and comments “men in the women’s dressing area? I guess there are curtains,” and she ducks into a changing room. When she emerges, he admires her coif. “Looks familiar,” he says. “Who knew I was a curly gray head?” she replies. We are one big family – this breast cancer club.
The radiology technician, a sweet young black woman named Marjorie, comes for me and leads us to the treatment room where a large intimidating machine fills the space. We meet Alex, a stunning Indian woman 8 months pregnant, and Raphael, a young Hispanic man. Besides their youth, all in their late twenties, I notice something else they have in common. They are all the same height, till I notice Alex who, despite her condition, is wearing heels! Chunky, not spikes, I note with relief. They briefly explain the plan and then, much to his disappointment, ask my husband to leave. “It’s too distracting for us,” Alex says.
I’m told to stretch my right arm because, once positioned, I will have to hold very still. I’m unconcerned, confident in my limberness. I am asked to lie down on the table, my head held in an armrest of sorts. I’m perfectly comfortable although they fuss over this for several minutes making sure. Then they position my left arm at my side which doesn’t really fit on the narrow table. A good amount of time is spent and I end up anchoring my hand under my hip comfortably. They keep reminding me that I will need to lie perfectly still for a long time. They’ve allowed an hour. This is your long appointment, they remind me. I think back to 5 hour chemo sessions. But here I have to lie still.
I make a few comments but they ignore me. They are intent on their measurements. One measures, two confirm, one writes it down repeating the numbers. Alex draws and writes on my exposed torso. She calls for her instruments, “purple”, “green”. The ink colors differentiate the 5 fields they will radiate. They are using the data from last week’s CAT scan, determining the angles which will avoid my heart and minimize exposure to my right lung. The bed is moved under the giant arm of the machine. They are careful to explain to me what to expect – clicking, whirring, the bed jerking positions. Then they exit, telling me they can see and hear me the whole time.
I concentrate on being still. “Be still and know that I am God.” Once, when I was going through a difficult time of deep sorrow and heartache for my son, a counsellor challenged me to be still, doing absolutely nothing for one hour, just listening to music. I sat in our glider on the deck. It was peaceful and warm, Aaron Copland’s “Appalachian Spring” playing. My eyes were closed. But the music yanked and tugged until it pulled from my heart precious memories of rocking my babies to this music and I was overcome with melancholy. I’m not good at being still.
I’m better at distracting myself. I recite scripture for a while and then move to poems. I found this one untitled in our parking garage in Honolulu. It was also unsigned, handwritten on a piece of ruled paper. I was quickly intrigued and put it to memory:
“Isn’t it funny how princes and kings
And clowns who caper in sawdust rings,
And simple folk like you and me
Are builders of eternity.
And each is given a set of tools,
A block of stone, a book of rules,
And each must build ‘ere the time has flown
A stumbling block or a stepping stone.”
My right hand is numb. My team reenters, new lines, more numbers, new x-ray film positioned. Continuously they confer and discuss the best positions and angles to achieve the numbers they need. “Can I scratch my eye?” I ask. “No,” Alex responds. “It’s freezing in here,” I say from my half naked position. “What’d she say?” asks Alex. Marjorie answers, “she’s cold”. They’re not unsympathetic, just busy. They concentrate on accuracy. I contribute my part – remaining motionless – except for the rapid brain activity. I try to relax but minutes later realize I’m tensed up again from the cold. My right hand is freezing. Marjorie tries to rub it but her hands are cold, too. She enlists Raphael whose warm hands gently massage mine while Alex draws another line in “blue”. Another film place and they leave again. I’m glad Alex’s baby is protected for the deadly rays.
“The sun was shining on the sea,
Shining with all it’s might.
He did his very best to make
The billows smooth and bright,
And this was off because it was
The middle of the night.
The moon was shining sulkily,
Because she thought the sun,
Had got no business to be there,
After the day was done.
“It’s very rude of him,” she said
“To come and spoil the fun.”………
I run through the rest of this Lewis Carrol poem I memorized in college while I waited for my roommates to finish their finals.
“Once upon a midnight dreary,
While I pondered weak and weary,
Over many a quaint and curious
Volume of forgotten lore.
While I nodded nearly napping,
Suddenly there came a tapping,
As of someone gently rapping,
Rapping at my chamber door……….”
The Raven, always a favorite.
The three techies return. “How much longer?” I ask, a child on a long journey.
“15 minutes,” says Raphael. But for these last minutes they stay with me and are suddenly warm and friendly. The last measurement seems unattainable without the machine crushing my ribs. They are trying to achieve “100” whatever that means. They confer and decide to consult a physicist on staff. Alex disappears and returns victorious. “Reset to 103,” she says and they all cheer. Perfect. We are done.
My husband and I sit in the waiting room – waiting. I laugh as I ponder this. More accurately we are being kept waiting. We always arrive early so we won’t be late. Okay, now this is really amusing me. Finally, at 12:20, I am called for my 11;45 appointment for which we arrived at 11:30. “Are you ready?” the assistant asks. “Oh, I’ve been ready for a while,” I say a bit sarcastically and immediately I regret it noting her tired eyes. (Sarcasm – the cutting of flesh – I’m sorry). They open at 4AM.
My husband tries to accompany me. The front desk girl told us he could, but this nurse seems unsure, too tired to decide actually. After a long hesitation she reluctantly allows him to follow us. I’m led to the women’s dressing area to change and he takes a seat. A female patient returns from treatment, notes my husband’s presence and comments “men in the women’s dressing area? I guess there are curtains,” and she ducks into a changing room. When she emerges, he admires her coif. “Looks familiar,” he says. “Who knew I was a curly gray head?” she replies. We are one big family – this breast cancer club.
The radiology technician, a sweet young black woman named Marjorie, comes for me and leads us to the treatment room where a large intimidating machine fills the space. We meet Alex, a stunning Indian woman 8 months pregnant, and Raphael, a young Hispanic man. Besides their youth, all in their late twenties, I notice something else they have in common. They are all the same height, till I notice Alex who, despite her condition, is wearing heels! Chunky, not spikes, I note with relief. They briefly explain the plan and then, much to his disappointment, ask my husband to leave. “It’s too distracting for us,” Alex says.
I’m told to stretch my right arm because, once positioned, I will have to hold very still. I’m unconcerned, confident in my limberness. I am asked to lie down on the table, my head held in an armrest of sorts. I’m perfectly comfortable although they fuss over this for several minutes making sure. Then they position my left arm at my side which doesn’t really fit on the narrow table. A good amount of time is spent and I end up anchoring my hand under my hip comfortably. They keep reminding me that I will need to lie perfectly still for a long time. They’ve allowed an hour. This is your long appointment, they remind me. I think back to 5 hour chemo sessions. But here I have to lie still.
I make a few comments but they ignore me. They are intent on their measurements. One measures, two confirm, one writes it down repeating the numbers. Alex draws and writes on my exposed torso. She calls for her instruments, “purple”, “green”. The ink colors differentiate the 5 fields they will radiate. They are using the data from last week’s CAT scan, determining the angles which will avoid my heart and minimize exposure to my right lung. The bed is moved under the giant arm of the machine. They are careful to explain to me what to expect – clicking, whirring, the bed jerking positions. Then they exit, telling me they can see and hear me the whole time.
I concentrate on being still. “Be still and know that I am God.” Once, when I was going through a difficult time of deep sorrow and heartache for my son, a counsellor challenged me to be still, doing absolutely nothing for one hour, just listening to music. I sat in our glider on the deck. It was peaceful and warm, Aaron Copland’s “Appalachian Spring” playing. My eyes were closed. But the music yanked and tugged until it pulled from my heart precious memories of rocking my babies to this music and I was overcome with melancholy. I’m not good at being still.
I’m better at distracting myself. I recite scripture for a while and then move to poems. I found this one untitled in our parking garage in Honolulu. It was also unsigned, handwritten on a piece of ruled paper. I was quickly intrigued and put it to memory:
“Isn’t it funny how princes and kings
And clowns who caper in sawdust rings,
And simple folk like you and me
Are builders of eternity.
And each is given a set of tools,
A block of stone, a book of rules,
And each must build ‘ere the time has flown
A stumbling block or a stepping stone.”
My right hand is numb. My team reenters, new lines, more numbers, new x-ray film positioned. Continuously they confer and discuss the best positions and angles to achieve the numbers they need. “Can I scratch my eye?” I ask. “No,” Alex responds. “It’s freezing in here,” I say from my half naked position. “What’d she say?” asks Alex. Marjorie answers, “she’s cold”. They’re not unsympathetic, just busy. They concentrate on accuracy. I contribute my part – remaining motionless – except for the rapid brain activity. I try to relax but minutes later realize I’m tensed up again from the cold. My right hand is freezing. Marjorie tries to rub it but her hands are cold, too. She enlists Raphael whose warm hands gently massage mine while Alex draws another line in “blue”. Another film place and they leave again. I’m glad Alex’s baby is protected for the deadly rays.
“The sun was shining on the sea,
Shining with all it’s might.
He did his very best to make
The billows smooth and bright,
And this was off because it was
The middle of the night.
The moon was shining sulkily,
Because she thought the sun,
Had got no business to be there,
After the day was done.
“It’s very rude of him,” she said
“To come and spoil the fun.”………
I run through the rest of this Lewis Carrol poem I memorized in college while I waited for my roommates to finish their finals.
“Once upon a midnight dreary,
While I pondered weak and weary,
Over many a quaint and curious
Volume of forgotten lore.
While I nodded nearly napping,
Suddenly there came a tapping,
As of someone gently rapping,
Rapping at my chamber door……….”
The Raven, always a favorite.
The three techies return. “How much longer?” I ask, a child on a long journey.
“15 minutes,” says Raphael. But for these last minutes they stay with me and are suddenly warm and friendly. The last measurement seems unattainable without the machine crushing my ribs. They are trying to achieve “100” whatever that means. They confer and decide to consult a physicist on staff. Alex disappears and returns victorious. “Reset to 103,” she says and they all cheer. Perfect. We are done.
Monday, March 2, 2009
February 23, 2009 CAT scan
I've never had a CAT scan and am not sure what to expect. It can't be any worse than a Pet Scan or a Muga scan. We wait a long time in this new waiting room. 5 other women are waiting in varying states of baldness and I try to imagine their stories. This location is temporarily accommodating Dr. Kuske's patients, whose equipment is not yet ready in his new location. I am meeting him here.
Finally I am taken back by a very sweet technician. Shoyei cannot accompany me and this is very hard for him. While we wait for the doctor to arrive I share my concern with the technician about scheduling the 5-day-a-week treatments. She informs me that as of today's schedule, the two available daily treatment times are 5:15AM and 10:15PM. This news sends my mind scrambling for a plan to deal with this unexpected scenario. I conclude this isn't going to work well at all. The technician assures me they will "work with me" since I'm driving from Prescott.
I lay on the "bed" and Dr. Kuske whips out his magic marker. He measures and writes and draws his plan on my chest. While the technician positions me, he tells me he will await the scan and calculate his treatment plan from there. He comments on my flexibility. "Most people can't do that so easily," he says as they place my right arm over my head. This pleases me. My stretching has worked.
He leaves and the technician starts the scan. I've warned her of my claustrophobia not really expecting any. This machine is not so intimidating. However, my trusty overactive imagination manages to make this five minute scan a trapped-at-the-bottom-of-a-well experience and I politely call to her through the intercom that I need to get out. "Hang in there, almost done, almost done." She repeats this for a minute or two and then I am done. I'm done and embarrassed and disappointed in myself all at once. "Irrational fear," I chide myself.
Oh well, another experience under my belt. I won't be afraid next time now that I know what to expect.
Awaiting the next step - a dry run and a tattoo.
I've never had a CAT scan and am not sure what to expect. It can't be any worse than a Pet Scan or a Muga scan. We wait a long time in this new waiting room. 5 other women are waiting in varying states of baldness and I try to imagine their stories. This location is temporarily accommodating Dr. Kuske's patients, whose equipment is not yet ready in his new location. I am meeting him here.
Finally I am taken back by a very sweet technician. Shoyei cannot accompany me and this is very hard for him. While we wait for the doctor to arrive I share my concern with the technician about scheduling the 5-day-a-week treatments. She informs me that as of today's schedule, the two available daily treatment times are 5:15AM and 10:15PM. This news sends my mind scrambling for a plan to deal with this unexpected scenario. I conclude this isn't going to work well at all. The technician assures me they will "work with me" since I'm driving from Prescott.
I lay on the "bed" and Dr. Kuske whips out his magic marker. He measures and writes and draws his plan on my chest. While the technician positions me, he tells me he will await the scan and calculate his treatment plan from there. He comments on my flexibility. "Most people can't do that so easily," he says as they place my right arm over my head. This pleases me. My stretching has worked.
He leaves and the technician starts the scan. I've warned her of my claustrophobia not really expecting any. This machine is not so intimidating. However, my trusty overactive imagination manages to make this five minute scan a trapped-at-the-bottom-of-a-well experience and I politely call to her through the intercom that I need to get out. "Hang in there, almost done, almost done." She repeats this for a minute or two and then I am done. I'm done and embarrassed and disappointed in myself all at once. "Irrational fear," I chide myself.
Oh well, another experience under my belt. I won't be afraid next time now that I know what to expect.
Awaiting the next step - a dry run and a tattoo.
February 20, 2009 Transitions
The vestiges if my chemo have almost disappeared. The bone pain is gone completely for which I am very grateful. The numbness in my fingers and toes lingers but has lessened this past week.
Today I have my port removed. I won't be needing it anymore. It is outpatient surgery at St. Joe's and requires only a local anesthetic. I'd been put to sleep for its implant by Dr. Corn. Dr. Kato didn't want me to go back to her so Dr. Mosharaffa agreed to remove it. I am so happy to finally have it removed.
For six months it has resided just below my left collar bone, a constant irritant with what I thought was some sort of pin floating just beneath my skin, constantly "poking" me from inside out as if it might push through.
Dr. Mosharaffa is ready for me early. My husband has just returned to the waiting room with my Starbucks, another perk of St. Joe's. The nurse let's me bring it to pre-op while they prep me and ask the dozens of the same questions I've answered a dozen times. Any allergies to latex, any problems with anesthetics? Any complaints? Cancer, I remind them.
I walk into the operating room and climb on the table. Dr. Mosharaffa enters gowned and masked, his beautiful dark eyes exuding warmth. He feels the site with his fingers. "You've got a suture in here," he says sounding surprised.
I am fully draped, my head covered until my thoughtful nurse makes a tent to hold the sheet off my face. The doctor, two nurses and I make small talk throughout the numbing and opening of my inch long port scar.
"There it is. Look at that, they left it in here," says Dr. M and then it gets quiet as he deals with the unexpected impediment to the port removal.
I feel no pain after the few needle pokes to numb me but it's strange to feel the pulling and prodding of someone inside your body. It takes about 10 minutes. Then I am sealed up with surgical glue and lay there another 5 minutes for the glue to dry with the aid of a blower the nurse holds over my wound.
"Look at this," the other nurse says, showing me the suture they'd removed. It is 6 or so inches long.
"It's not wrong to use a fiberglass suture," Dr. M says, pulling his gloves off. "I just don't know why you would or why you wouldn't cut the tail off," He wonders out loud. It is understood we will not reference who did this or her other mistakes.
"Feel this," the nurse says, "sharp as a needle!"
No one needs to tell me how sharp it is but I feel it anyway. Dr. Corn had tied a knot and left an inch long tail. Six months of this unnecessary thorn in the flesh. They show me the port itself - it looks exactly like it felt - like a flying saucer.
I get up and walk out of surgery. My Starbucks is still warm. The nurses wouldn't think of letting me waste it. They've saved it for me at their station.
Next stop......radiation.
The vestiges if my chemo have almost disappeared. The bone pain is gone completely for which I am very grateful. The numbness in my fingers and toes lingers but has lessened this past week.
Today I have my port removed. I won't be needing it anymore. It is outpatient surgery at St. Joe's and requires only a local anesthetic. I'd been put to sleep for its implant by Dr. Corn. Dr. Kato didn't want me to go back to her so Dr. Mosharaffa agreed to remove it. I am so happy to finally have it removed.
For six months it has resided just below my left collar bone, a constant irritant with what I thought was some sort of pin floating just beneath my skin, constantly "poking" me from inside out as if it might push through.
Dr. Mosharaffa is ready for me early. My husband has just returned to the waiting room with my Starbucks, another perk of St. Joe's. The nurse let's me bring it to pre-op while they prep me and ask the dozens of the same questions I've answered a dozen times. Any allergies to latex, any problems with anesthetics? Any complaints? Cancer, I remind them.
I walk into the operating room and climb on the table. Dr. Mosharaffa enters gowned and masked, his beautiful dark eyes exuding warmth. He feels the site with his fingers. "You've got a suture in here," he says sounding surprised.
I am fully draped, my head covered until my thoughtful nurse makes a tent to hold the sheet off my face. The doctor, two nurses and I make small talk throughout the numbing and opening of my inch long port scar.
"There it is. Look at that, they left it in here," says Dr. M and then it gets quiet as he deals with the unexpected impediment to the port removal.
I feel no pain after the few needle pokes to numb me but it's strange to feel the pulling and prodding of someone inside your body. It takes about 10 minutes. Then I am sealed up with surgical glue and lay there another 5 minutes for the glue to dry with the aid of a blower the nurse holds over my wound.
"Look at this," the other nurse says, showing me the suture they'd removed. It is 6 or so inches long.
"It's not wrong to use a fiberglass suture," Dr. M says, pulling his gloves off. "I just don't know why you would or why you wouldn't cut the tail off," He wonders out loud. It is understood we will not reference who did this or her other mistakes.
"Feel this," the nurse says, "sharp as a needle!"
No one needs to tell me how sharp it is but I feel it anyway. Dr. Corn had tied a knot and left an inch long tail. Six months of this unnecessary thorn in the flesh. They show me the port itself - it looks exactly like it felt - like a flying saucer.
I get up and walk out of surgery. My Starbucks is still warm. The nurses wouldn't think of letting me waste it. They've saved it for me at their station.
Next stop......radiation.
Friday, February 27, 2009
February 14, 2009 From the Chair
Last chemo-welcome words. Has it really been six months since I started? The interruption of surgery stretched it out making it seem like forever. I'm not sure how I feel. I'm glad it's coming to an end and even happier that it has worked so effectively. I know I'm repeating myself but I'm so very grateful for these treatments. I think about the current health care proposals and what the changes might have meant for me. I worry about what it will mean for future patients.
Dr. Kato has granted me a reprieve from the Neulasta shot - the culprit guilty of more than just bone pain. There is also the possibility of heart damage. The high pulse and intense hot flashing are a few of the others. Anyway, the main reason for taking it was to keep my immune system up so I would make it to the next chemo and since this is my last I can forgo it. I just need to be extra cautious about crowds this week. I'm without protection.
I overhear patients share war stories, comparing exhaustion and nausea levels and I marvel that I've had none of it. I hear them discussing how long they've been battling their illness and here I'm expecting to finish up and walk away. One woman is asking each patient their story. The stories are horrible. I keep my nose in a book so she won't ask me. I feel guilty that my story has happy ending and then I think, but there are no guarantees.I've learned so much about life, about myself. I've especially learned of God's faithfulness in our trials. Amazing! Some of what I've learned:
My imagination greatly exceeds reality.
God is closest in the valleys.
His Peace is Vast.I cannot live without Hope.
My faith is deep and wide.
My church ministers Christ's love in word and deed.
My husband really loves me. He really loves taking care of me. He works tirelessly for me, for us. My love for him is deeper and more comfortable than ever.
My son's voice makes me smile. His prayer requests make me feel useful. There's a connection in our passion for Truth.
All prayer requests keep me useful.
My God-honoring daughter ministers soul comfort to me like no other. I know it's mutual. We are Mama Yama and Little Yama(thanks Josiah!) forever.
My mother loves me sacrificially. She is my mommy in my suffering. I feel at home in her presence.
My sister is a thoughtful gift-giver. She's upbeat, fun and loving. Our bond reaches from our childhood.
My brother is a precious, battle-tested encourager. We are united in our quest to know God better. We have a deep respect for one another.
My cousin is still my eternal sister. We are reunited in the love of our childhood. I cry tears of joy for her.
I have strengthened relationships with three of our step daughters - praise God they all trust in our Lord and we have shared prayers for each other.
My real estate team is a rock of loving support and loyalty.We are a family of believers bearing one another's burdens, trusting God in all things.
My family of friends, old and new is vast and so dear to me. Encouragers all. I'm shocked at their numbers and feel wealthy beyond measure. Many many are new or renewed.
There are a few special warriors who've done battle with me in the trenches. They humble and strengthen me. They've taught me the power of a praying army.
Many are suffering far worse than I. I will not complain.
Trials produce opportunities.This is engraved now in my soul.
My Blackberry makes a handy journal.I love to write. It crystallizes my thoughts and records my life lessons.
One month before I was diagnosed, I asked God to humble me and give me a heart of compassion. He has graciously, tenderly given me just that.
Last chemo-welcome words. Has it really been six months since I started? The interruption of surgery stretched it out making it seem like forever. I'm not sure how I feel. I'm glad it's coming to an end and even happier that it has worked so effectively. I know I'm repeating myself but I'm so very grateful for these treatments. I think about the current health care proposals and what the changes might have meant for me. I worry about what it will mean for future patients.
Dr. Kato has granted me a reprieve from the Neulasta shot - the culprit guilty of more than just bone pain. There is also the possibility of heart damage. The high pulse and intense hot flashing are a few of the others. Anyway, the main reason for taking it was to keep my immune system up so I would make it to the next chemo and since this is my last I can forgo it. I just need to be extra cautious about crowds this week. I'm without protection.
I overhear patients share war stories, comparing exhaustion and nausea levels and I marvel that I've had none of it. I hear them discussing how long they've been battling their illness and here I'm expecting to finish up and walk away. One woman is asking each patient their story. The stories are horrible. I keep my nose in a book so she won't ask me. I feel guilty that my story has happy ending and then I think, but there are no guarantees.I've learned so much about life, about myself. I've especially learned of God's faithfulness in our trials. Amazing! Some of what I've learned:
My imagination greatly exceeds reality.
God is closest in the valleys.
His Peace is Vast.I cannot live without Hope.
My faith is deep and wide.
My church ministers Christ's love in word and deed.
My husband really loves me. He really loves taking care of me. He works tirelessly for me, for us. My love for him is deeper and more comfortable than ever.
My son's voice makes me smile. His prayer requests make me feel useful. There's a connection in our passion for Truth.
All prayer requests keep me useful.
My God-honoring daughter ministers soul comfort to me like no other. I know it's mutual. We are Mama Yama and Little Yama(thanks Josiah!) forever.
My mother loves me sacrificially. She is my mommy in my suffering. I feel at home in her presence.
My sister is a thoughtful gift-giver. She's upbeat, fun and loving. Our bond reaches from our childhood.
My brother is a precious, battle-tested encourager. We are united in our quest to know God better. We have a deep respect for one another.
My cousin is still my eternal sister. We are reunited in the love of our childhood. I cry tears of joy for her.
I have strengthened relationships with three of our step daughters - praise God they all trust in our Lord and we have shared prayers for each other.
My real estate team is a rock of loving support and loyalty.We are a family of believers bearing one another's burdens, trusting God in all things.
My family of friends, old and new is vast and so dear to me. Encouragers all. I'm shocked at their numbers and feel wealthy beyond measure. Many many are new or renewed.
There are a few special warriors who've done battle with me in the trenches. They humble and strengthen me. They've taught me the power of a praying army.
Many are suffering far worse than I. I will not complain.
Trials produce opportunities.This is engraved now in my soul.
My Blackberry makes a handy journal.I love to write. It crystallizes my thoughts and records my life lessons.
One month before I was diagnosed, I asked God to humble me and give me a heart of compassion. He has graciously, tenderly given me just that.
Wednesday, February 11, 2009
February 10, 2009
The beauty that greeted me as I arose this morning took my breath away. Since moving to The Canyons we've been disappointed that whatever snowfall blanketed the rest of Prescott, bypassed our slightly warmer clime. But today I was delighted by this sight. The snow crystals capture the light of the rising sun and glisten. What a spectacular show. It has me singing and praising God for His Creation and for another day to enjoy it.
Shoyei and I met with our radiology oncologist last week and learned a little more about the next step. two weeks after my final chemo(which is 3 days hence, woohoo!), I will have a CAT scan. From the images produced Dr. Kuske will design a plan to pinpoint five radiation beams converging in such a manner as to avoid any damage to my heart and minimal exposure to my lung. It took no more than a minute with Dr. Kuske for us to decide he is the doctor we want. His credentials are impressive and he has just opened the first breast cancer specific oncology practice in the world(his words). It's called ABCs for Arizona Breast Cancer specialists.
From my writing journal: His presence speaks comfort. He is about 5'8", soft and pudgy and walks slightly pigeon toed. His blue eyes say "I care", his voice says "you can trust me". His manner is confident yet humble. Sandy hair, slightly long, curls at his neck. "I'm the guy who writes the textbooks," he says, matter-of-factly.
We've checked him out. He's received numerous awards. He is the doctor who designed the radiation seed method for breast cancer. It's less invasive and only takes a week of treatment but because the original size of my tumor was 5cm(large), I am not a candidate. I will receive 35 treatments. The drive is our issue but we've decided to deal with it for the privilege of being his patient. "Will my skin turn black?" Dr. Mosharaffa(plastic surgeon) mentioned this possibility which tells me he has seen this side affect. "You will end up with a Jamaican sunburn," he tells me. "I will bring you this close(holding up two fingers pinched together) to blistering and then stop." My mind flashes back to such a sunburn. I was lying on my back, my father's suntanning lamp aimed at my chest. I wanted a healthy tan for my senior prom dress. I whiled my time talking on the phone. My "tan" turned into a Jamaican sunburn with a telephone cord emblazoned across my chest. I can handle this, I think.
There's a lot ahead. I've never had a CAT scan and don't know what to expect as far as my claustrophobia. A cancer friend tells me I will receive a tattoo of little dots for the radiologist to aim at(is that a dreaded "dangling participle"?) to assure the beams are hitting the exact spot every time. Don't tattoos hurt? But, hey, sunburns and tattoos are done in the name of beauty every day, right? Someone else's idea of beauty, I muse.
Monday, February 9, 2009
February 5th, 2009 Hot flashing
Whoosh! A hot flash overtakes me and I'm awakened for the fourth time tonight. I pad my way to the bathroom in the dark, my bare feet relishing the cold tile. I luxuriate in this brief oasis a moment before diving back into cool sheets. I have a favorite card with a picture of a menopausal woman with a cup and saucer balanced on her head. The caption says, "Edith finds new and creative ways to use her hot flashes."
How do you describe a hot flash to a non-sufferer? There is a huge rush of adrenaline - the 'fight or flight' chemical our bodies use to equip us for action. Where's the action I ask myself. It puts our brains on high alert which in my case means I am fully alert and prepared in the middle of the night and broken out in a sweat for what? No worries, in a minute or two I will be shivering from cold. It's an E ticket experience without the ride.
My head hits the pillow and I hear the staccato beat of my pulse in my ears. Boom boom boom boom boom! My husband took my pulse earlier this evening. 109. "How long has it been this high," he asks? Since my last chemo I think. I tried to use our recumbent exercise bike but my pulse at 160 was so loud I stopped. Normal for me is 72.
The bone pain is pretty bad this time which is normal. It is most intense from the hips down. It pulsates pain from one joint to the next and back. Today my heels are throbbing. I just read numerous blogs on the subject and realize it could be a whole lot worse. Nothing really seems to help including Oxycodone. It's begun to fade so that's 3 days of discomfort - not bad.
God is using this time at home for me to rest and be still in Him.
Whoosh! A hot flash overtakes me and I'm awakened for the fourth time tonight. I pad my way to the bathroom in the dark, my bare feet relishing the cold tile. I luxuriate in this brief oasis a moment before diving back into cool sheets. I have a favorite card with a picture of a menopausal woman with a cup and saucer balanced on her head. The caption says, "Edith finds new and creative ways to use her hot flashes."
How do you describe a hot flash to a non-sufferer? There is a huge rush of adrenaline - the 'fight or flight' chemical our bodies use to equip us for action. Where's the action I ask myself. It puts our brains on high alert which in my case means I am fully alert and prepared in the middle of the night and broken out in a sweat for what? No worries, in a minute or two I will be shivering from cold. It's an E ticket experience without the ride.
My head hits the pillow and I hear the staccato beat of my pulse in my ears. Boom boom boom boom boom! My husband took my pulse earlier this evening. 109. "How long has it been this high," he asks? Since my last chemo I think. I tried to use our recumbent exercise bike but my pulse at 160 was so loud I stopped. Normal for me is 72.
The bone pain is pretty bad this time which is normal. It is most intense from the hips down. It pulsates pain from one joint to the next and back. Today my heels are throbbing. I just read numerous blogs on the subject and realize it could be a whole lot worse. Nothing really seems to help including Oxycodone. It's begun to fade so that's 3 days of discomfort - not bad.
God is using this time at home for me to rest and be still in Him.
Friday, February 6, 2009
February 6th, 2008 On Flashing, Sleeping and Bone Pain
Whoosh! A hot flash overtakes me and I'm awakened for the fourth time tonight. I pad my way to the bathroom in the dark, my bare feet relishing the cold tile. I luxuriate in this brief oasis a moment before diving back into cool sheets. I have a favorite card with a picture of a menopausal woman with a cup and saucer balanced on her head. The caption says, "Edith finds new and creative ways to use her hot flashes." How do you describe a hot flash to a non-sufferer? There is a huge rush of adrenaline - the 'fight or flight' chemical our bodies use to equip us for action. Where's the action I ask myself. It puts our brains on high alert which in my case means I am fully alert and prepared in the middle of the night and broken out in a sweat for what? No worries, in a minute or two I will be shivering from cold. It's an E ticket experience without the ride.
My head hits the pillow and I hear the staccato beat of my pulse in my ears. Boom boom boom boom boom! My husband took my pulse earlier this evening. 109. "How long has it been this high," he asks? Since my last chemo I think. I tried to use our recumbent exercise bike but my pulse at 160 was so loud I stopped. Normal for me is 72.
The bone pain is pretty bad this time which is normal. It is most intense from the hips down. It pulsates pain from one joint to the next and back. Today my heels are throbbing. I just read numerous blogs on the subject and realize it could be a whole lot worse. Nothing really seems to help including Oxycodone. It's begun to fade so that's 3 days of discomfort - not bad.
God is using this time at home for me to rest and be still in Him.
Whoosh! A hot flash overtakes me and I'm awakened for the fourth time tonight. I pad my way to the bathroom in the dark, my bare feet relishing the cold tile. I luxuriate in this brief oasis a moment before diving back into cool sheets. I have a favorite card with a picture of a menopausal woman with a cup and saucer balanced on her head. The caption says, "Edith finds new and creative ways to use her hot flashes." How do you describe a hot flash to a non-sufferer? There is a huge rush of adrenaline - the 'fight or flight' chemical our bodies use to equip us for action. Where's the action I ask myself. It puts our brains on high alert which in my case means I am fully alert and prepared in the middle of the night and broken out in a sweat for what? No worries, in a minute or two I will be shivering from cold. It's an E ticket experience without the ride.
My head hits the pillow and I hear the staccato beat of my pulse in my ears. Boom boom boom boom boom! My husband took my pulse earlier this evening. 109. "How long has it been this high," he asks? Since my last chemo I think. I tried to use our recumbent exercise bike but my pulse at 160 was so loud I stopped. Normal for me is 72.
The bone pain is pretty bad this time which is normal. It is most intense from the hips down. It pulsates pain from one joint to the next and back. Today my heels are throbbing. I just read numerous blogs on the subject and realize it could be a whole lot worse. Nothing really seems to help including Oxycodone. It's begun to fade so that's 3 days of discomfort - not bad.
God is using this time at home for me to rest and be still in Him.
Wednesday, February 4, 2009
January 31st, 2009
This week's chemo seemed routine. It's hard to believe I only have one to go. At my previous session I asked my nurse if I would lose my hair which is a full inch long now and she said no. I was delighted. But she was wrong.
I tried to ignore the familiar sensation of soreness on my scalp but yesterday I couldn't deny the hair filling my hand as I run my fingers over my head. But alas, it is short enough that my lint roller picks it right off of my head!
My main side affect from the last chemo was bone pain. Whether from the Taxol or Neulasta, after my Thursday chemo, it hit me Sunday at noon and I moaned and groaned with leg pains from my hips to my heels and a sharp pain in my right chest wall. I was told to take Claritin for the pain and I guess it made the pain tolerable. It lasted about 3 days. I think - hey, you're taking poison, what did you expect? Miraculous, wonderful, cancer-killing poison. When my son was small, suffering from asthma, he boldly faced his medicine stating, "a man's gotta do, what a man's gotta do". He was seven. I don't know where he heard that but I think of it now with a smile.
Shoyei and I are now researching radiation, the next step. I read yesterday that it is not always advised if there has been a mastectomy and 3 or fewer lymph nodes involved. That would be me. The main negative to radiating the chest area is potential damage to the heart and lung. I'm grateful at least that my cancer was not in my left side nearer the heart. In fact, it was all the way on the right side of my right breast so that's good I think.Our dilemma is this: radiation is 5 days a week for 7 weeks. The doctor I've seen, Dr. Kuske, is in Scottsdale - a 4 hour round trip drive. I really like him and he's an acclaimed radiologist who's just opened a breast cancer specific radiology practice, the only one in Arizona. He's a renowned author on the subject and it was he who recommended my neoadjuvent(before surgery) chemotherapy to shrink the tumor. I have tremendous confidence in him. Our local radiologist has a terrible reputation so I can't go to him. There's a cancer center an hour away and they have a bus that I can pick up nearby which is free. The facility there is general radiology. We need to know if Dr. Kuske's treatment will be worth the time and expense of the drive so we are fortifying ourselves with questions for our visit with him next week.
I've decided, the worst part of chemo is the emotional weakness I experience during the first week. God seems to plant His people in my path for these times and yesterday it was my daughter who lifted me with encouragement. My hyper sensitivity seems to fade by the second week.
And I have a very definite brain fog. I keep panicking that I've forgotten to do something. Last week I stared at a market analysis I had done for a client but I couldn't remember going over it with him. Molly, my office manager, said yes, they were in here last week. When I attended my 15 year high school reunion, I came home wearing my name badge which was made from our yearbook photo and blurb. I had pinned it on without reading it. My husband read it as I stood talking to him and declared "Aha! Kathleen, otherwise known as forgetful!" I looked at it for myself, "I don't remember that!" Years later, I decided to do something about improving my memory so I went to our local library. I found a book in the card file(remember those) entitled "How to Improve Your Memory" but it was checked out so I put my name on the list. Months passed and I got a call from the librarian about "that book you ordered." "I don't remember ordering a book," I said. She started to giggle then laugh and it took a while for her to stop. Finally she collected herself and mirthfully said, "you requested a book 'How to Improve Your Memory' (still giggling) but apparently(laughing again) the guy who had it checked out forgot to return it!" I caught her contagious laugh and we howled together. In grade school my report card was always marked "Needs to Improve" in "Responsibility". I was forever forgetting my homework, my lunch, my coat. Living across the street saved me repeatedly as I would holler to my mother from the schoolyard fence. So....can I blame my current memory problems on chemo brain fog? Guess I'll never know. When I first read about chemo brain fog I was alarmed at a suggestion that a mother have her children wear name tags(no joke) and told my daughter about it. The next week she met me at the hospital wearing a tag "Carrie(Daughter)". She meant for me to laugh but I cried. I couldn't bear the thought of not recognizing the people I love. Thank God, it hasn't happened. Yet.
This week's chemo seemed routine. It's hard to believe I only have one to go. At my previous session I asked my nurse if I would lose my hair which is a full inch long now and she said no. I was delighted. But she was wrong.
I tried to ignore the familiar sensation of soreness on my scalp but yesterday I couldn't deny the hair filling my hand as I run my fingers over my head. But alas, it is short enough that my lint roller picks it right off of my head!
My main side affect from the last chemo was bone pain. Whether from the Taxol or Neulasta, after my Thursday chemo, it hit me Sunday at noon and I moaned and groaned with leg pains from my hips to my heels and a sharp pain in my right chest wall. I was told to take Claritin for the pain and I guess it made the pain tolerable. It lasted about 3 days. I think - hey, you're taking poison, what did you expect? Miraculous, wonderful, cancer-killing poison. When my son was small, suffering from asthma, he boldly faced his medicine stating, "a man's gotta do, what a man's gotta do". He was seven. I don't know where he heard that but I think of it now with a smile.
Shoyei and I are now researching radiation, the next step. I read yesterday that it is not always advised if there has been a mastectomy and 3 or fewer lymph nodes involved. That would be me. The main negative to radiating the chest area is potential damage to the heart and lung. I'm grateful at least that my cancer was not in my left side nearer the heart. In fact, it was all the way on the right side of my right breast so that's good I think.Our dilemma is this: radiation is 5 days a week for 7 weeks. The doctor I've seen, Dr. Kuske, is in Scottsdale - a 4 hour round trip drive. I really like him and he's an acclaimed radiologist who's just opened a breast cancer specific radiology practice, the only one in Arizona. He's a renowned author on the subject and it was he who recommended my neoadjuvent(before surgery) chemotherapy to shrink the tumor. I have tremendous confidence in him. Our local radiologist has a terrible reputation so I can't go to him. There's a cancer center an hour away and they have a bus that I can pick up nearby which is free. The facility there is general radiology. We need to know if Dr. Kuske's treatment will be worth the time and expense of the drive so we are fortifying ourselves with questions for our visit with him next week.
I've decided, the worst part of chemo is the emotional weakness I experience during the first week. God seems to plant His people in my path for these times and yesterday it was my daughter who lifted me with encouragement. My hyper sensitivity seems to fade by the second week.
And I have a very definite brain fog. I keep panicking that I've forgotten to do something. Last week I stared at a market analysis I had done for a client but I couldn't remember going over it with him. Molly, my office manager, said yes, they were in here last week. When I attended my 15 year high school reunion, I came home wearing my name badge which was made from our yearbook photo and blurb. I had pinned it on without reading it. My husband read it as I stood talking to him and declared "Aha! Kathleen, otherwise known as forgetful!" I looked at it for myself, "I don't remember that!" Years later, I decided to do something about improving my memory so I went to our local library. I found a book in the card file(remember those) entitled "How to Improve Your Memory" but it was checked out so I put my name on the list. Months passed and I got a call from the librarian about "that book you ordered." "I don't remember ordering a book," I said. She started to giggle then laugh and it took a while for her to stop. Finally she collected herself and mirthfully said, "you requested a book 'How to Improve Your Memory' (still giggling) but apparently(laughing again) the guy who had it checked out forgot to return it!" I caught her contagious laugh and we howled together. In grade school my report card was always marked "Needs to Improve" in "Responsibility". I was forever forgetting my homework, my lunch, my coat. Living across the street saved me repeatedly as I would holler to my mother from the schoolyard fence. So....can I blame my current memory problems on chemo brain fog? Guess I'll never know. When I first read about chemo brain fog I was alarmed at a suggestion that a mother have her children wear name tags(no joke) and told my daughter about it. The next week she met me at the hospital wearing a tag "Carrie(Daughter)". She meant for me to laugh but I cried. I couldn't bear the thought of not recognizing the people I love. Thank God, it hasn't happened. Yet.
January 17th, 2009
Today is my birthday! I awoke feeling great! First good night sleep I've had in a long time. No night sweats woke me up. I slept in one of my husbands cotton t shirts instead of my polyester nightgown. Today I think I'll go shopping for a cotton nightgown. I lay in bed taking stock: today is my birthday. I'm 58. I am a daughter of Yahweh. I had chemo two days ago and feel wonderful today. I arise, praising God. I grab a handful of pills. An antiacid for heartburn which was pretty bad yesterday because I forgot to take it before chemo, Claritin and Ibuprofen for the bone pain I'm told to expect today. It seems crazy to be feeling as good as I do. My husband, on the other hand came to bed at midnight but I realized he wasn't there a few hours later. He's asleep in his chair this morning so I quietly pull the door to the den shut.
I picked up my blackberry to check for messages and there is a very sweet email from a new friend. I thank God for her. She is someone I have admired from afar. Her demeanor exudes gentleness. She offers to bring me a jewelry kit. I don't know what a jewelry kits are but it sounds like fun. I really can't imagine staying home away from crowds for 6 weeks when I'm feeling like this. I'm getting a different more powerful shot to boost my immune system. It's called Neulasta. My insurance company wouldn't pay for it before at $5000 per injection. So I got 3 shots of Neupogen instead for $1500. Some arrangement doctor Kato has at his new office makes Neulasta more affordable. And for me it means I don't have to make the trips down on the alternating weeks to check my blood. They give it to me the day after chemo and I'm done for 2 weeks.
A few minutes after I arise my phone rings and its my son, Danny, calling to wish me Happy Birthday. I remember as a child judging how good a birthday was by the gifts I received. The "gifts" I desire have changed. Feeling rested and healthy is certainly a gift but phone calls from loved ones are my favorite. Shortly after I hang up with Danny, my sister Janet calls me. Danny said they just got heat yesterday in his new apartment. He lives with three other students. They've been using space heaters to save money but it's too cold for the pipes at 3 below zero in Virginia so they paid for heating oil. Janet is planning to take a hike today - the California is experiencing a heatwave in January. I remember awaking on my 11th birthday to snow in Palo Alto!
My mother is taking me to lunch today. How grateful I am to be close to her. Then we'll go shopping - I have a Christmas gift card I "need" to spend. I marvel that I feel like doing this. I feel very blessed indeed.
Today is my birthday! I awoke feeling great! First good night sleep I've had in a long time. No night sweats woke me up. I slept in one of my husbands cotton t shirts instead of my polyester nightgown. Today I think I'll go shopping for a cotton nightgown. I lay in bed taking stock: today is my birthday. I'm 58. I am a daughter of Yahweh. I had chemo two days ago and feel wonderful today. I arise, praising God. I grab a handful of pills. An antiacid for heartburn which was pretty bad yesterday because I forgot to take it before chemo, Claritin and Ibuprofen for the bone pain I'm told to expect today. It seems crazy to be feeling as good as I do. My husband, on the other hand came to bed at midnight but I realized he wasn't there a few hours later. He's asleep in his chair this morning so I quietly pull the door to the den shut.
I picked up my blackberry to check for messages and there is a very sweet email from a new friend. I thank God for her. She is someone I have admired from afar. Her demeanor exudes gentleness. She offers to bring me a jewelry kit. I don't know what a jewelry kits are but it sounds like fun. I really can't imagine staying home away from crowds for 6 weeks when I'm feeling like this. I'm getting a different more powerful shot to boost my immune system. It's called Neulasta. My insurance company wouldn't pay for it before at $5000 per injection. So I got 3 shots of Neupogen instead for $1500. Some arrangement doctor Kato has at his new office makes Neulasta more affordable. And for me it means I don't have to make the trips down on the alternating weeks to check my blood. They give it to me the day after chemo and I'm done for 2 weeks.
A few minutes after I arise my phone rings and its my son, Danny, calling to wish me Happy Birthday. I remember as a child judging how good a birthday was by the gifts I received. The "gifts" I desire have changed. Feeling rested and healthy is certainly a gift but phone calls from loved ones are my favorite. Shortly after I hang up with Danny, my sister Janet calls me. Danny said they just got heat yesterday in his new apartment. He lives with three other students. They've been using space heaters to save money but it's too cold for the pipes at 3 below zero in Virginia so they paid for heating oil. Janet is planning to take a hike today - the California is experiencing a heatwave in January. I remember awaking on my 11th birthday to snow in Palo Alto!
My mother is taking me to lunch today. How grateful I am to be close to her. Then we'll go shopping - I have a Christmas gift card I "need" to spend. I marvel that I feel like doing this. I feel very blessed indeed.
November 11, 2008,
I amble along at the pace of someone 87 instead of 57. My "walker" is my husband. I am stooped because standing up straight is painful causing the lower incision lines to stretch.
We are headed into the Cancer center to see my oncologist, Dr. Kato. We seem to live for these appointments to get the news of progress or next steps.
I stop to use the restroom but lack the strength to open the door so Shoyei gets it for me. Every movement is pathetically slow which is such an irritance for this multi-tasker.
The purpose of this visit is to determine whether or not I can afford to wait two months before resuming chemo. Shoyei carefully unwraps his handiwork. I watch Dr. Kato. He stands with his left arm crossing his body and his right hand over his mouth. He shakes his head and closes his eyes. Shoyei redresses me. "I'll be very honest," Dr. Kato begins. "In all my years (my guess is he's 50 something) "I've never seen anything like this." He acknowledges the obvious burns which Dr. Corn (the perpetrator of this crime) told Shoyei was "thin skin". Dr. Kato says that he absolutely will not administer chemo until this has healed. He also said "no wonder you're still experiencing so much pain, that's a terrible wound".
I asked him, "So Dr. Kato, do you feel that delaying my chemo in anyway compromises my treatment?" Absolutley not he says.
So I guess my worst case scenario in this process is it could take 4 to 8 months longer than I'd planned. Oh well, I am expecting my mastectomy to be fully healed in the 6 to 8 weeks.
I amble along at the pace of someone 87 instead of 57. My "walker" is my husband. I am stooped because standing up straight is painful causing the lower incision lines to stretch.
We are headed into the Cancer center to see my oncologist, Dr. Kato. We seem to live for these appointments to get the news of progress or next steps.
I stop to use the restroom but lack the strength to open the door so Shoyei gets it for me. Every movement is pathetically slow which is such an irritance for this multi-tasker.
The purpose of this visit is to determine whether or not I can afford to wait two months before resuming chemo. Shoyei carefully unwraps his handiwork. I watch Dr. Kato. He stands with his left arm crossing his body and his right hand over his mouth. He shakes his head and closes his eyes. Shoyei redresses me. "I'll be very honest," Dr. Kato begins. "In all my years (my guess is he's 50 something) "I've never seen anything like this." He acknowledges the obvious burns which Dr. Corn (the perpetrator of this crime) told Shoyei was "thin skin". Dr. Kato says that he absolutely will not administer chemo until this has healed. He also said "no wonder you're still experiencing so much pain, that's a terrible wound".
I asked him, "So Dr. Kato, do you feel that delaying my chemo in anyway compromises my treatment?" Absolutley not he says.
So I guess my worst case scenario in this process is it could take 4 to 8 months longer than I'd planned. Oh well, I am expecting my mastectomy to be fully healed in the 6 to 8 weeks.
December 21st 2008, Healing
Last week I had my mastectomy stitches removed. My remaining wound has shrunk in half. A large band-aid covers it freeing me from the ace bandage which I've worn since October 29th. With this new freedom comes the realization that the tightness around my chest is not from the bandage. I went on a breast cancer blog and "eaves dropped" on the conversations of dozens of women. This rubber band feeling, it seems, it permanent and I will get used to it hopefully. It clearly drives a lot of women crazy. I hadn't known to expect this. I feel as if I'm wearing something. Some described it as a too tight bra.I sought out exercises for stretching and began those.
But after weeks, I am able to sleep on my side which I know causes me to have a smile on my face falling asleep. Thank You Lord! It just takes an extra pillow for support but at least my husband doesn't have to listen to any more snoring.
Three ladies have contacted me with a breast cancer diagnosis for them self or loved one since I started this journey. Three other ladies have walked this path before me and have offered insight and encouragement. I'm glad to pray for them all, so sorry they have to go through this. The breast cancer blogs say, "welcome to the club you never wanted to join".
I will resume the remaining 3 sessions of chemotherapy in mid January. Not sure if that will be followed by radiation or another attempt with tissue expanders. The alternative is radiation first and reconstruction six months to a year later performed by using the lattisimus dorsi muscle from the back. I'm praying for the expander route if the radiologist deems it safe to wait. I am amazed by medicine and all they can do.
Looking back, I can see all I've come through so far. For me the hardest part was the pain and its requirement for narcotics. The narcotics made me depressed and mentally weak but I was so glad to have them. I also found out that Percoset stops hot flashes! A blessing in the thorn!
December 27th, 2008, Cancer Paranoia
I hit the "funny bone" of my knee on the edge of a chair. It was the usual funny bone incident, that wierd pain resonating throughout my leg until slowly dying out. After two days the resulting bruised feeling went away and I forgot about it. When it it came back a week later I was jumping to conclusions - bone cancer. I remember having trouble with this knee before because my Step Aerobics teacher told me to find an alternative exercise.
I'm wondering if my PET scan missed something. A friend told me her doctor doesn't trust the Prescott Valley PET scan which is where mine was done. So I'm wondering if its the machine or the radiologist who reads it he doesn't trust. Anyway I'm not really worried except about the fact I may be analayzing every normal ache and pain which have been increasing with the advancing years.Its an unfamiliar paranoia for someone who, other than breast cancer, is the picture of health. I'm hoping after a few clear reports the tension will ease.
I noticed a blogging headline on this topic a while back but didn't realize its pertinence until now. Its all part of the journey. How else to understand the whole cancer picture but to experience it?
The antibiotics I took for my tissue expander rejection caused an intestinal problem which was zapping my energy so now I'm taking antibiotics for the antibiotic reaction. My surgery wound is fully healed. At last I feel great - almost normal except for my knee. Now I'm ready to finish my chemo, 7 weeks if radiation. My radiologist nixed the idea of trying the expanders again before he gets his job done. What that means for me as far as reconstruction is concerned, is I will wait 6 to 12 months and then have reconstruction surgery using the latissimus dorsi muscles from my back. Whew! I get worn out thinking about all this. One day at a time.
Just to keep life interesting Shoyei has just been scheduled for surgery Jan 21st to have his gall bladder removed which is right between chemo session 6 and 7. It's outpatient surgery but it's sounds fairly invasive so I'm sure he won't be very comfortable for a while. Hopefull next year we can look back on this time of challenges with gratitude for good health! I'm so blessed to have both of my children with me for a week and my wonderful son-in-law here as his job permits. They are a fresh breath of air at a time like this! Life is good!
I hit the "funny bone" of my knee on the edge of a chair. It was the usual funny bone incident, that wierd pain resonating throughout my leg until slowly dying out. After two days the resulting bruised feeling went away and I forgot about it. When it it came back a week later I was jumping to conclusions - bone cancer. I remember having trouble with this knee before because my Step Aerobics teacher told me to find an alternative exercise.
I'm wondering if my PET scan missed something. A friend told me her doctor doesn't trust the Prescott Valley PET scan which is where mine was done. So I'm wondering if its the machine or the radiologist who reads it he doesn't trust. Anyway I'm not really worried except about the fact I may be analayzing every normal ache and pain which have been increasing with the advancing years.Its an unfamiliar paranoia for someone who, other than breast cancer, is the picture of health. I'm hoping after a few clear reports the tension will ease.
I noticed a blogging headline on this topic a while back but didn't realize its pertinence until now. Its all part of the journey. How else to understand the whole cancer picture but to experience it?
The antibiotics I took for my tissue expander rejection caused an intestinal problem which was zapping my energy so now I'm taking antibiotics for the antibiotic reaction. My surgery wound is fully healed. At last I feel great - almost normal except for my knee. Now I'm ready to finish my chemo, 7 weeks if radiation. My radiologist nixed the idea of trying the expanders again before he gets his job done. What that means for me as far as reconstruction is concerned, is I will wait 6 to 12 months and then have reconstruction surgery using the latissimus dorsi muscles from my back. Whew! I get worn out thinking about all this. One day at a time.
Just to keep life interesting Shoyei has just been scheduled for surgery Jan 21st to have his gall bladder removed which is right between chemo session 6 and 7. It's outpatient surgery but it's sounds fairly invasive so I'm sure he won't be very comfortable for a while. Hopefull next year we can look back on this time of challenges with gratitude for good health! I'm so blessed to have both of my children with me for a week and my wonderful son-in-law here as his job permits. They are a fresh breath of air at a time like this! Life is good!
December 15th 2008, Adjusting to Body Changes
I am not travelling uncharted waters nor am I Captainless. Many have been here before me. Yet, I feel like an old Spanish galleon floundering bottom heavy with my topside whittled away. And while my personal experience with ships on high seas is limited, something does not seems right. My maneuvering, try as I might, is lumbersome and awkward and I long for my pre-mangled body.
All this to say, to slide into bed, stretch one arm up under my pillow and pull my upper leg up for support has long been my preferred position for sleep. Oh how I took that simple luxury for granted. The removal of lymph nodes makes stretching difficult and I wonder if I'll ever have full use of my body again. Stretching is an unappreciated pleasure until you lose it and the older you get the better the chance it'll trigger a charlie horse. I'm glad these bodies are temporary!
I am not travelling uncharted waters nor am I Captainless. Many have been here before me. Yet, I feel like an old Spanish galleon floundering bottom heavy with my topside whittled away. And while my personal experience with ships on high seas is limited, something does not seems right. My maneuvering, try as I might, is lumbersome and awkward and I long for my pre-mangled body.
All this to say, to slide into bed, stretch one arm up under my pillow and pull my upper leg up for support has long been my preferred position for sleep. Oh how I took that simple luxury for granted. The removal of lymph nodes makes stretching difficult and I wonder if I'll ever have full use of my body again. Stretching is an unappreciated pleasure until you lose it and the older you get the better the chance it'll trigger a charlie horse. I'm glad these bodies are temporary!
December 4th 2008, Hot turkey
Phoenix for doctor day. We met with Dr. Kato(my oncologist who replaced Dr. Thakker when he quit). We received a letter from Dr. Kato's group informing us that Dr. Kato has given his notice and that I was being assigned to doctor number 3! I couldn't have written this script. Do you need an outline? However, it turns out I get to move with Dr. Kato to his new practice. He's taking 5 of their people with him including my chemo nurse! I guess this practice has chased off 3 of the younger doctors interested in the latest chemo movements over this past year. They're not into new ideas. Dr. Kato is waiting on my healing before he resumes my last 3 chemos.
On to Dr. Mosharrafa. He was so wonderful and apologetic and compassionate. He told me he felt devastated by what had happened to me. I got my drains out(and never have to have them again - and believe me that's a blessing). We headed to Phoenix with my intending to go cold turkey - no pain meds for the drain removal torture but Dr. Kato said why? This was no time to play "hero". Turns out the pill Nazi came prepared. I'm sure it helped but geez man it still hurt!Anyway, I was released from all my bandaging which with the 3 feet of tubing felt like what I imagine a corset might feel like. So glad to live beyond that era. We could see that Dr. M had closed up all but one small remaining wound which we will let heal now. Shoyei and I left feeling really good about him and so relieved to have another chapter behind us.
Our third stop was to visit Bonnie at "Tina's Treasures". If you know anyone going through this you must tell them to visit Bonnie. She's been through the whole ordeal and is loving, compassionate and funny! I left with some new (prosthetic) lingerie to help me feel a little girlier again.It was a good day.
Phoenix for doctor day. We met with Dr. Kato(my oncologist who replaced Dr. Thakker when he quit). We received a letter from Dr. Kato's group informing us that Dr. Kato has given his notice and that I was being assigned to doctor number 3! I couldn't have written this script. Do you need an outline? However, it turns out I get to move with Dr. Kato to his new practice. He's taking 5 of their people with him including my chemo nurse! I guess this practice has chased off 3 of the younger doctors interested in the latest chemo movements over this past year. They're not into new ideas. Dr. Kato is waiting on my healing before he resumes my last 3 chemos.
On to Dr. Mosharrafa. He was so wonderful and apologetic and compassionate. He told me he felt devastated by what had happened to me. I got my drains out(and never have to have them again - and believe me that's a blessing). We headed to Phoenix with my intending to go cold turkey - no pain meds for the drain removal torture but Dr. Kato said why? This was no time to play "hero". Turns out the pill Nazi came prepared. I'm sure it helped but geez man it still hurt!Anyway, I was released from all my bandaging which with the 3 feet of tubing felt like what I imagine a corset might feel like. So glad to live beyond that era. We could see that Dr. M had closed up all but one small remaining wound which we will let heal now. Shoyei and I left feeling really good about him and so relieved to have another chapter behind us.
Our third stop was to visit Bonnie at "Tina's Treasures". If you know anyone going through this you must tell them to visit Bonnie. She's been through the whole ordeal and is loving, compassionate and funny! I left with some new (prosthetic) lingerie to help me feel a little girlier again.It was a good day.
December 2nd 2008, Recovering Anew
Pain is an odd thing and different for everyone. It seems to be all about the nervous system. I am a lot more comfortable today even though I feel as if I’m starting over with both breasts assaulted, tight bandaging and drains. No bathing for three days. But the extreme pain of the right expander and the discomfort of the leaky drain are gone. I have numbness on the breast area but so far it has been a blessing. My doctor says feeling will return slowly. True? I have odd nerve feelings down my right underarm all the way to my wrist – the lymph node chain line I assume.
The expanders were never supposed to be filled to start with. Seeing the thinness of my skin my doctor felt it would prevent the expanders from pushing through by being filled enough to round the edges. In fact, he told me at my initial consultation that the chance of rejection from partially filled expanders was too risky and he didn’t subscribe to it. So imagine my surprise when I awoke to just that. In hindsight, I feel he should have chosen to close me up and plan on the alternative journey I am now on. Oh well, God has been busy working on me. I am not much of a sit still person so it has been a good time for me in that regard.
Pain is an odd thing and different for everyone. It seems to be all about the nervous system. I am a lot more comfortable today even though I feel as if I’m starting over with both breasts assaulted, tight bandaging and drains. No bathing for three days. But the extreme pain of the right expander and the discomfort of the leaky drain are gone. I have numbness on the breast area but so far it has been a blessing. My doctor says feeling will return slowly. True? I have odd nerve feelings down my right underarm all the way to my wrist – the lymph node chain line I assume.
The expanders were never supposed to be filled to start with. Seeing the thinness of my skin my doctor felt it would prevent the expanders from pushing through by being filled enough to round the edges. In fact, he told me at my initial consultation that the chance of rejection from partially filled expanders was too risky and he didn’t subscribe to it. So imagine my surprise when I awoke to just that. In hindsight, I feel he should have chosen to close me up and plan on the alternative journey I am now on. Oh well, God has been busy working on me. I am not much of a sit still person so it has been a good time for me in that regard.
December 1st 2008, Emergency Surgery
Another surgery complete. Today's 45 minute surgery ended up being 2 hours which had my husband a bit freaked out. Turns out my body was rejecting both tissue expanders. At least my pain was justified! And once again I have the pleasure of tubes and drains and the anticipation of their breath taking, literally, removal. Either my sense of humor is returning or I'm losing it, but this strikes me as funny. Ladies, did the shocking pain of childbirth stop you from baby #2? Why not? It's sort of fascinating.
Today's semi-emergency procedure was at St Joseph's Outpatient Surgery Center in Phoenix and it was first class - no complaints. My experience was an A+. I'm not really planning on a personal analysis of all local hospitals but I've experienced 4 now so feel free to contact me for my opinion.My sense of humor is gradually returning - gosh I've missed her.What I learned during this round? That even when I wanted to turn my back on God, He stuck to me like glue and didn't hold my weakness against me. I am humbled
Another surgery complete. Today's 45 minute surgery ended up being 2 hours which had my husband a bit freaked out. Turns out my body was rejecting both tissue expanders. At least my pain was justified! And once again I have the pleasure of tubes and drains and the anticipation of their breath taking, literally, removal. Either my sense of humor is returning or I'm losing it, but this strikes me as funny. Ladies, did the shocking pain of childbirth stop you from baby #2? Why not? It's sort of fascinating.
Today's semi-emergency procedure was at St Joseph's Outpatient Surgery Center in Phoenix and it was first class - no complaints. My experience was an A+. I'm not really planning on a personal analysis of all local hospitals but I've experienced 4 now so feel free to contact me for my opinion.My sense of humor is gradually returning - gosh I've missed her.What I learned during this round? That even when I wanted to turn my back on God, He stuck to me like glue and didn't hold my weakness against me. I am humbled
November 28th 2008, Rejecting Expander
To say one has not suffered enough sounds martyrish and to some foolish. But who has not faced some great challenge and later realized the value of experience in relating to new challenges.So, here I am. During this morning's dressing change, my husband was clearly alarmed and called the doctor to report he could see the expander. I was horrified. Monday I will go back into surgery to remove my right expander.
I have in the short span of a few hours cried, felt self-pity, been angry and blessedly feasted on words of Hope. It is one more stage to pass through. It will add months(3 I think) to my total treatment. Months to learn more and hopefully see God at work.
When I was first diagnosed with this cancer, I understood there was opportunity in the danger(Chinese for crisis). But here alone on the high seas of the storm it is often difficult to keep that perspective. At the end of each day though, I'm simply happy for another day even of trials. Another opportunity to tell you if you are receiving this email it is because I love you and am grateful for the chance to tell you so.
To say one has not suffered enough sounds martyrish and to some foolish. But who has not faced some great challenge and later realized the value of experience in relating to new challenges.So, here I am. During this morning's dressing change, my husband was clearly alarmed and called the doctor to report he could see the expander. I was horrified. Monday I will go back into surgery to remove my right expander.
I have in the short span of a few hours cried, felt self-pity, been angry and blessedly feasted on words of Hope. It is one more stage to pass through. It will add months(3 I think) to my total treatment. Months to learn more and hopefully see God at work.
When I was first diagnosed with this cancer, I understood there was opportunity in the danger(Chinese for crisis). But here alone on the high seas of the storm it is often difficult to keep that perspective. At the end of each day though, I'm simply happy for another day even of trials. Another opportunity to tell you if you are receiving this email it is because I love you and am grateful for the chance to tell you so.
November 26th 2008, Dr. Report
Saw the doctor and he drained 240 of the 300cc of saline from my right side where the expander was just about to bust through! Gross - it's like Alien(the movie)!I feel 1000% better!
Saw the doctor and he drained 240 of the 300cc of saline from my right side where the expander was just about to bust through! Gross - it's like Alien(the movie)!I feel 1000% better!
November 23rd 2008, Nitty Gritty
Writing an open journal has its drawbacks. My concern for the sensibilities of the reader have sometimes rendered me mute. There's a lot of gross stuff going on. You may choose to read no further or your curiosity may have you wondering. I will further confess, between the oxycodone(Percoset) and the Valium my thoughts tend to take strange and unexpected tangents which is fun for me but confusing for you. Sorry in advance but the requirement for pain management has far exceeded my expectations.
It really did seem like the worst thing I had left to contend with was the tube protruding from my right side about halfway between my armpit and my waist which had the nasty habit of leaking. When we headed down for last Tuesday's visit to the doctor it was with the anticipation of a child on Christmas morning. Something good was definitely happening today. I was to be "unplugged" (and left with mellower music?).Nothing could dissuade my enthusiasm.
I took a Percoset halfway down the two hour drive to Phoenix anticipating some discomfort. 30 minutes out, the pill Nazi hands me a second Percoset. "I already took one," I remind him but he says "just in case". He knows something, I think to myself. When the moment arrives, Dr. Mosharrafa tells me to take 3 deep breaths and then he pulls...and he pulls...and he pulls - the friction of 18 inches of plastic tubing rubbing against my raw wound. I'm left clinging to my husband, panting and in shock at what felt something like having a sword pulled out of one's side. But, like childbirth, its over and nearly forgotten. The left side is less shocking and soon. I'm free! It's an amazing feeling. I can shower!
When I tell Dr. Mosharrafa that Dr. Kato is fine with waiting on chemo until I'm healed, he seems very pleased. "Eight weeks," he says. "From surgery?" My husband asks. "From today," he answers. To heal or not to heal - that is the question of the day and tomorrow - etcetera etcetera(I'm hearing the King of Siam in my head). The party line is this: some women have thin skin which makes healing more difficult. It is meant to explain the numerous open wounds across my chest. The words "burn" and "cauterize" are no longer mentioned.
Dr. M explains that unlike our parent's(I'm probably old enough to be his) who believed in letting air dry the wound and form a scab, today's thought is to keep it moist and let it heal from the inside out. Eight more weeks of twice a day dressing changes, the task at which my husband's expertise is critically important. I ask Dr. Mosharrafa what chance he thinks I have of avoiding tissue expanders rejection. I've spoken with two friends who took a long time healing but finally did. "And that's exactly what I expect," he says. We walk out on a cloud.
Next we go to see Dr. Corn. She is mainly just curious since at this point I'm solely in the surgical care of Dr. Mosharrafa. She oohs and aahs about how great I look and how she's "seen much worse. This is nothing, you'll be fine!" I like her but I don't believe her. She would be more convincing on a cheer leading squad. I mean I believe I will heal but she makes me feel like she's selling it. "I skinned you good," she asserts proudly.
A friend of a friend has recommended another surgeon for a second opinion. The idea hangs in the air between us for a few days before we whittle away at the distance and agree we are not up to that battle at this stage.
We are so excited at the end of the "tubes and drains" chapter that we jump on the freeway and head home for a celebration dinner. However 30 miles from nowhere, Shoyei realizes we're out of gas(a first time experience for my 747 captain) so we call AAA and wait.
By the day's end, we're simply happy to get home.We settle into the routine of dressing changes. Shoyei performs his task with determined efficiency but his enthusiasm for the job has waned which I interpret to mean this is actually grossing him out. Or he is just exhausted. I sneak a peak and decide on the grossed-out theory. I think he is struggling to remember the girl he married with a full head of hair, eye lashes and eyebrows(mine have finally gone), smooth skin(he lovingly rubs lotions on my shoulders and back where I cannot reach and where a lizard scale has taken over), and this dessicated torso.
He reminds me of the occasion in Vietnam when he had to shove a man's intestines back in his belly and struggle to hold them there while they awaited medical aid. "A man's gotta do what a man's gotta do" - I smirk at the phrase, at the surprise I felt when my eight year old son stated it with such manly determination as he took his dose of asthma medicine. Shoyei is diligent as if it is up to him alone whether I avoid rejection.
I am having good days and bad days. One day I feel great, I exercise, eat well and get by on 1 1/2 Percosets. The next day I take 5 Percosets and a Valium, have no appetite and feel as if someone somewhere is working me over as a voodoo doll. Shoyei and I alternately analyze the possible reasons for my day-to-day condition. Did I lift something? Was the ace bandage too tight and therefore moving the expanders? Perhaps the fluid that is still leaking is in some sort of Ninja battle to keep the absorption "in house".
Anyway, I remain in a good frame of mind with a planned trip to Tucson for Thanksgiving with my daughter and her husband and the arrival of my son for an extended Christmas visit.
Day-by-day, Day by dayO Dear Lord these things I pray:
To see thee more clearly,Love thee more dearly,
To follow thee more nearly, Day by day by day by day.
Writing an open journal has its drawbacks. My concern for the sensibilities of the reader have sometimes rendered me mute. There's a lot of gross stuff going on. You may choose to read no further or your curiosity may have you wondering. I will further confess, between the oxycodone(Percoset) and the Valium my thoughts tend to take strange and unexpected tangents which is fun for me but confusing for you. Sorry in advance but the requirement for pain management has far exceeded my expectations.
It really did seem like the worst thing I had left to contend with was the tube protruding from my right side about halfway between my armpit and my waist which had the nasty habit of leaking. When we headed down for last Tuesday's visit to the doctor it was with the anticipation of a child on Christmas morning. Something good was definitely happening today. I was to be "unplugged" (and left with mellower music?).Nothing could dissuade my enthusiasm.
I took a Percoset halfway down the two hour drive to Phoenix anticipating some discomfort. 30 minutes out, the pill Nazi hands me a second Percoset. "I already took one," I remind him but he says "just in case". He knows something, I think to myself. When the moment arrives, Dr. Mosharrafa tells me to take 3 deep breaths and then he pulls...and he pulls...and he pulls - the friction of 18 inches of plastic tubing rubbing against my raw wound. I'm left clinging to my husband, panting and in shock at what felt something like having a sword pulled out of one's side. But, like childbirth, its over and nearly forgotten. The left side is less shocking and soon. I'm free! It's an amazing feeling. I can shower!
When I tell Dr. Mosharrafa that Dr. Kato is fine with waiting on chemo until I'm healed, he seems very pleased. "Eight weeks," he says. "From surgery?" My husband asks. "From today," he answers. To heal or not to heal - that is the question of the day and tomorrow - etcetera etcetera(I'm hearing the King of Siam in my head). The party line is this: some women have thin skin which makes healing more difficult. It is meant to explain the numerous open wounds across my chest. The words "burn" and "cauterize" are no longer mentioned.
Dr. M explains that unlike our parent's(I'm probably old enough to be his) who believed in letting air dry the wound and form a scab, today's thought is to keep it moist and let it heal from the inside out. Eight more weeks of twice a day dressing changes, the task at which my husband's expertise is critically important. I ask Dr. Mosharrafa what chance he thinks I have of avoiding tissue expanders rejection. I've spoken with two friends who took a long time healing but finally did. "And that's exactly what I expect," he says. We walk out on a cloud.
Next we go to see Dr. Corn. She is mainly just curious since at this point I'm solely in the surgical care of Dr. Mosharrafa. She oohs and aahs about how great I look and how she's "seen much worse. This is nothing, you'll be fine!" I like her but I don't believe her. She would be more convincing on a cheer leading squad. I mean I believe I will heal but she makes me feel like she's selling it. "I skinned you good," she asserts proudly.
A friend of a friend has recommended another surgeon for a second opinion. The idea hangs in the air between us for a few days before we whittle away at the distance and agree we are not up to that battle at this stage.
We are so excited at the end of the "tubes and drains" chapter that we jump on the freeway and head home for a celebration dinner. However 30 miles from nowhere, Shoyei realizes we're out of gas(a first time experience for my 747 captain) so we call AAA and wait.
By the day's end, we're simply happy to get home.We settle into the routine of dressing changes. Shoyei performs his task with determined efficiency but his enthusiasm for the job has waned which I interpret to mean this is actually grossing him out. Or he is just exhausted. I sneak a peak and decide on the grossed-out theory. I think he is struggling to remember the girl he married with a full head of hair, eye lashes and eyebrows(mine have finally gone), smooth skin(he lovingly rubs lotions on my shoulders and back where I cannot reach and where a lizard scale has taken over), and this dessicated torso.
He reminds me of the occasion in Vietnam when he had to shove a man's intestines back in his belly and struggle to hold them there while they awaited medical aid. "A man's gotta do what a man's gotta do" - I smirk at the phrase, at the surprise I felt when my eight year old son stated it with such manly determination as he took his dose of asthma medicine. Shoyei is diligent as if it is up to him alone whether I avoid rejection.
I am having good days and bad days. One day I feel great, I exercise, eat well and get by on 1 1/2 Percosets. The next day I take 5 Percosets and a Valium, have no appetite and feel as if someone somewhere is working me over as a voodoo doll. Shoyei and I alternately analyze the possible reasons for my day-to-day condition. Did I lift something? Was the ace bandage too tight and therefore moving the expanders? Perhaps the fluid that is still leaking is in some sort of Ninja battle to keep the absorption "in house".
Anyway, I remain in a good frame of mind with a planned trip to Tucson for Thanksgiving with my daughter and her husband and the arrival of my son for an extended Christmas visit.
Day-by-day, Day by dayO Dear Lord these things I pray:
To see thee more clearly,Love thee more dearly,
To follow thee more nearly, Day by day by day by day.
November 13th 2008, Progress Report
Up until know my cancer treatment has been pretty easy. At least nothing as bad as I first feared. I even felt guilty for not suffering enough. On Tuesday my husband and I drove down for my two week check up expecting to have the drains removed. So I was terribly disappointed when Dr. Mosharrafa said he wanted to wait one more week. But worse news followed. He said he was concerned about the possibility that my skin was not healing. It's paper thin because Dr. Corn aggressively got all the tissue she could. The hope is that the remaining skin will get enough circulation to thrive. He says we'll just continue the twice a day dressing changes for the next 6 to 8 weeks! This does not compute. I hate this part and can't imagine 6 to 8 weeks more of it.
Could be worse I tell myself, thinking of a friend who is presently in a burn center. He says he will not do anything to compromise my treatment which is to say its up to my oncologist, Dr. Kato, who we'll see tomorrow. The possibility is that my body is rejecting the expanders. Last night I experienced two hours of violent shivering. I had a fever of 100. This morning it is 100.6. So we are awaiting a call back from the doctor.
Either way, I feel at peace. I have the most incredible support group - prayer warriors par excellence starting with my daughter who sends such wonderful encouragement. The blessings from this cancer are beyond my expectations.I confess this has not been all mountaintop experience. I have shaken my fist at God but it seems the moment I do, he sends a saint to lift me up! And yes, I would still do this again if it were up to me.
Up until know my cancer treatment has been pretty easy. At least nothing as bad as I first feared. I even felt guilty for not suffering enough. On Tuesday my husband and I drove down for my two week check up expecting to have the drains removed. So I was terribly disappointed when Dr. Mosharrafa said he wanted to wait one more week. But worse news followed. He said he was concerned about the possibility that my skin was not healing. It's paper thin because Dr. Corn aggressively got all the tissue she could. The hope is that the remaining skin will get enough circulation to thrive. He says we'll just continue the twice a day dressing changes for the next 6 to 8 weeks! This does not compute. I hate this part and can't imagine 6 to 8 weeks more of it.
Could be worse I tell myself, thinking of a friend who is presently in a burn center. He says he will not do anything to compromise my treatment which is to say its up to my oncologist, Dr. Kato, who we'll see tomorrow. The possibility is that my body is rejecting the expanders. Last night I experienced two hours of violent shivering. I had a fever of 100. This morning it is 100.6. So we are awaiting a call back from the doctor.
Either way, I feel at peace. I have the most incredible support group - prayer warriors par excellence starting with my daughter who sends such wonderful encouragement. The blessings from this cancer are beyond my expectations.I confess this has not been all mountaintop experience. I have shaken my fist at God but it seems the moment I do, he sends a saint to lift me up! And yes, I would still do this again if it were up to me.
November 8th 2008, Recovering
The first week few days home from mastectomy surgery aren't bad. Medication controls the pain. Nine well placed pillows prop me and I am, surprisingly, able to sleep on my back. Two of these pillows are little flannel hearts that fit comfortably under my armpits to prevent chafing. God bless the hands that sewed them. I am wearing an ingenious garment. It is a camesole of the softest cotton knit with thoughtfully constructed interior pockets to hold drain bulbs, tubes and prosthetic breasts(which are empty). The bulbs attach to tubes running from each under arm acting as suctions siphoning off body fluid until the lymphatic system kicks in and takes over.
Twice a day my husband removes each bulb and squeezes the murky contents into a measuring cup to record the amount collected. He manages this task with great attention to detail and a deft touch for my comfort. It's the way he approaches everything. One day as he was absorbed in these ministrations my mind flashed back 35 years ago- I was a flight attendant and my husband was the captain of our DC10. Upon descent into to Boston's Logan Airport we lost an engine. The older flight attendants assured us we had nothing to worry about, Captain Yamauchi was at the helm. His reputation as a skilled airman dispelled all fear and he gently set our big old bird down, passengers none the wiser. These are the same hands that care for me now I am thinking.
We saw my plastic surgeon three days ago. He removed the bandages and we got our first look at my massacred chest. From my vantage point, I can't see too much which I'm sure is a blessing. I prefer to investigate later in private. For now, looking down I can see the outline of the tissue expanders creating little malformed mounds. I check out my husband's expression. He wavers between curiosity and horror. I love him for trying to control this transfer of thoughts to expression but his heart is clearly broken for me. We are entering a whole new kind of intimacy.
Dr. Mosharrafa points to a place on my left, heretofore healthy "breast", and explains,"this is a burn where Dr. Corn was cauterizing" outlining 4 square inches and two 1/4" holes of skin damage. Its said matter-of-factly and I'm too stunned to respond. Considering the rest of the devastation, it seems to makes little difference now. I'm not up to assessing this new information and neither is my husband. We are two weary warriors and this information is more than we can deal with right now.There is a lot more pain the second week because twice a day Shoyei has to change my dressings. I realize now that I'd never thought this far out. It's a nasty job and seems too much to ask. But this too he does with love.
Did I mention he was a child prodigy - he played piano with the San Francisco symphony, he played for the king and queen of Norway. He has a feather touch and my skin is numb anyway so I can't feel the wiping or stinging. Unconvinced, he continues his gentle ways. What I feel a is a deep aching pain that has me sucking in air and concentrating on my diaphragm breathing. This new regimen has me doubling my pain pill intake but Shoyei's stingy with my meds. For one thing he's afraid I'll become addicted. Yesterday afternoon he tried to get me to hold out between doses. "On a scale of 1 to 10, how would you describe your pain?". Like the hospital nurses would ask. I tell him I am a 4(10 being childbirth). I know perfectly well he doesn't want me to suffer. He plunks a heavy naturopathic tome on my lap and points to the paragraphs he wants me to read. It states that narcotics(i.e. my Percoset pain pills) may actually contribute to the spreading of cancer. Two of my doctors have already poo pooed this. I feel caught in the battle between traditional, heavily documented medicine and the naturopathic approach which sounds good but what about pain? Right now I vote for the route of pain relief.
I've become hesitant to call Shoyei for a pill only to have him look at me like a junkie. My prescription says 'take 1 to 2 every 4 hours as needed for pain'. I take 3 to 4 a day but my nurse Ratchet would like to see that down to 1 or 2. So I guess it's obvious I'm growing grouchier by the minute. Finally we agree to call the doctor who tells us both if I hurt, I get a pain pill. But they also agree to alternate my medication between Percoset and Valium, the latter is a muscle relaxant. Perhaps muscle cramps are a partly responsible for my pain. I'm happy to report, 24 hours later, it's already making a difference.
There has been a wonderful highlight to this week. We have been blessed with meal after meal provided by some women from my church. Flowers and gifts and cards have helped me through some of the toughest days. I keep reminding myself how very blessed I am.
"O Joy that seekest me through pain,I cannot close my heart to Thee,I trace the rainbow through the rain,And feel the promise is not in vain,That morn shall tearless be."-George Matheson
The first week few days home from mastectomy surgery aren't bad. Medication controls the pain. Nine well placed pillows prop me and I am, surprisingly, able to sleep on my back. Two of these pillows are little flannel hearts that fit comfortably under my armpits to prevent chafing. God bless the hands that sewed them. I am wearing an ingenious garment. It is a camesole of the softest cotton knit with thoughtfully constructed interior pockets to hold drain bulbs, tubes and prosthetic breasts(which are empty). The bulbs attach to tubes running from each under arm acting as suctions siphoning off body fluid until the lymphatic system kicks in and takes over.
Twice a day my husband removes each bulb and squeezes the murky contents into a measuring cup to record the amount collected. He manages this task with great attention to detail and a deft touch for my comfort. It's the way he approaches everything. One day as he was absorbed in these ministrations my mind flashed back 35 years ago- I was a flight attendant and my husband was the captain of our DC10. Upon descent into to Boston's Logan Airport we lost an engine. The older flight attendants assured us we had nothing to worry about, Captain Yamauchi was at the helm. His reputation as a skilled airman dispelled all fear and he gently set our big old bird down, passengers none the wiser. These are the same hands that care for me now I am thinking.
We saw my plastic surgeon three days ago. He removed the bandages and we got our first look at my massacred chest. From my vantage point, I can't see too much which I'm sure is a blessing. I prefer to investigate later in private. For now, looking down I can see the outline of the tissue expanders creating little malformed mounds. I check out my husband's expression. He wavers between curiosity and horror. I love him for trying to control this transfer of thoughts to expression but his heart is clearly broken for me. We are entering a whole new kind of intimacy.
Dr. Mosharrafa points to a place on my left, heretofore healthy "breast", and explains,"this is a burn where Dr. Corn was cauterizing" outlining 4 square inches and two 1/4" holes of skin damage. Its said matter-of-factly and I'm too stunned to respond. Considering the rest of the devastation, it seems to makes little difference now. I'm not up to assessing this new information and neither is my husband. We are two weary warriors and this information is more than we can deal with right now.There is a lot more pain the second week because twice a day Shoyei has to change my dressings. I realize now that I'd never thought this far out. It's a nasty job and seems too much to ask. But this too he does with love.
Did I mention he was a child prodigy - he played piano with the San Francisco symphony, he played for the king and queen of Norway. He has a feather touch and my skin is numb anyway so I can't feel the wiping or stinging. Unconvinced, he continues his gentle ways. What I feel a is a deep aching pain that has me sucking in air and concentrating on my diaphragm breathing. This new regimen has me doubling my pain pill intake but Shoyei's stingy with my meds. For one thing he's afraid I'll become addicted. Yesterday afternoon he tried to get me to hold out between doses. "On a scale of 1 to 10, how would you describe your pain?". Like the hospital nurses would ask. I tell him I am a 4(10 being childbirth). I know perfectly well he doesn't want me to suffer. He plunks a heavy naturopathic tome on my lap and points to the paragraphs he wants me to read. It states that narcotics(i.e. my Percoset pain pills) may actually contribute to the spreading of cancer. Two of my doctors have already poo pooed this. I feel caught in the battle between traditional, heavily documented medicine and the naturopathic approach which sounds good but what about pain? Right now I vote for the route of pain relief.
I've become hesitant to call Shoyei for a pill only to have him look at me like a junkie. My prescription says 'take 1 to 2 every 4 hours as needed for pain'. I take 3 to 4 a day but my nurse Ratchet would like to see that down to 1 or 2. So I guess it's obvious I'm growing grouchier by the minute. Finally we agree to call the doctor who tells us both if I hurt, I get a pain pill. But they also agree to alternate my medication between Percoset and Valium, the latter is a muscle relaxant. Perhaps muscle cramps are a partly responsible for my pain. I'm happy to report, 24 hours later, it's already making a difference.
There has been a wonderful highlight to this week. We have been blessed with meal after meal provided by some women from my church. Flowers and gifts and cards have helped me through some of the toughest days. I keep reminding myself how very blessed I am.
"O Joy that seekest me through pain,I cannot close my heart to Thee,I trace the rainbow through the rain,And feel the promise is not in vain,That morn shall tearless be."-George Matheson
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