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 everyone'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.
Tuesday, April 7, 2009
Saturday, April 4, 2009
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 stomaches. 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 stomaches. 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 2 ish 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". Noone 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 Tai 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 blonde 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 2 ish 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". Noone 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 Tai 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 blonde 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.
March 5, 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 regurns 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 grayhead?” 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 instuments, “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 luyng. 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 eyese 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 xray 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 hime,” 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 chanmber 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 regurns 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 grayhead?” 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 instuments, “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 luyng. 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 eyese 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 xray 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 hime,” 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 chanmber 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.
February 23, 2009 CAT scan
February 23, 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 accomodating 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 scedule, 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 embarassed 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 tatoo.
February 23, 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 accomodating 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 scedule, 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 embarassed 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 tatoo.
February 20, 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.
February 20, Transitions
"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!"
Noone 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.
February 20, Transitions
"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!"
Noone 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.
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, January 28, 2009
January 15th 2009, Perspectives
It's been 14 weeks since my last chemo and I feel like a novice. How quickly the memory of prior chemos has flown. How did I feel afterwards? I'm in the chair getting started. New location, unfamiliar surroundings. The room I'm in is huge with high ceilings and 7' high 10' long partitions creating "areas", each with 2 to 3 chairs. At first I miss the other location where all chairs faced one direction. Here the patients face one another. Some are chattering away seemingly full of energy and encouragement for each other. Others smile tired sympathic smiles.
So much has happened in the past 14 weeks - two surgeries, a Presidential election, Christmas and a New Year. (My energy returned in full the week after Christmas.) The whole earth seems to be groaning with wars and rumors of wars, fears of financial disaster.
So here I sit, receiving the first of my last 3 chemos. I don't remember much probably because there wasn't much to remember. Only the 1" growth of hair on my head is left to mark the treatments past. I expect to lose it though.
I skipped my daily dose of antioxidents this morning. I must give them up until after my final chemo. Every cell in my body is left unprotected and I picture the innocent cells standing like little soldiers, helplessly, bravely, as the attack begins. What is to me a tranquil 3 hour drip of Taxotere is a fearsome battle for my body. Unfortunately many healthy happy cells will die alongside the destructive life-sapping ones. It's a necessary sacrifice I tell them, for the good of the body. Hair cells die with cancer cells. I think of our soldiers at war and realize once again the small price of baldness.
A small feisty woman I guess to be in her seventies joins us. A patient I cannot see comments he hasn't seen her in a while. "I quit," she said, "I gave my body a break, but they called and said it was time to get started again, so here I am. What do you think of the new place?" she asks then answers her own question before he has a chance, "I think it's terrible!" "Helen, are you behaving yourself?" asks the nurse. "No!" she answers offering chocolates from a large box to the patients. She shoves the box at the nurse. "You ask the others," she says, "I'm too tired." She plomps into the only vacant chair. "I was hoping the chairs would be full and they'd send me home." "You keeping busy?" A man's voice behind the partition asks her. "I've got a busy week," Helen says, "I see the dentist on Monday and the priest on Tuesday. I haven't been to confession for a while. Don't have much to tell him. You gonna give me a DVD player to shut me up?" She asks the nurse hooking her up to an IV. "There's a movie I want to see that'll give me something to tell the priest." The nurse giggles, sets her up and Helen quiets down.
The Benedryl is making me sleepy but I'm too nosy to sleep. There are too many lives to observe. These partitions make eavesdropping legal.
My nutritionist told me to drink lots of water to flush the poison out of my system so I'm making numerous trips to the Restroom dragging my IV tubes, infusion bags and the pole they're suspended from behind me like an unwelcome pest. The Taxotere bag is almost empty - maybe 20 more minutes worth and then only two chemos left! Yeah! It's not so bad really. I heard cancer clinics in Nevada were closed and patients were having to go outside their state. I'm grateful for the opportunity to have this treatment.
So much has happened in the past 14 weeks - two surgeries, a Presidential election, Christmas and a New Year. (My energy returned in full the week after Christmas.) The whole earth seems to be groaning with wars and rumors of wars, fears of financial disaster.
So here I sit, receiving the first of my last 3 chemos. I don't remember much probably because there wasn't much to remember. Only the 1" growth of hair on my head is left to mark the treatments past. I expect to lose it though.
I skipped my daily dose of antioxidents this morning. I must give them up until after my final chemo. Every cell in my body is left unprotected and I picture the innocent cells standing like little soldiers, helplessly, bravely, as the attack begins. What is to me a tranquil 3 hour drip of Taxotere is a fearsome battle for my body. Unfortunately many healthy happy cells will die alongside the destructive life-sapping ones. It's a necessary sacrifice I tell them, for the good of the body. Hair cells die with cancer cells. I think of our soldiers at war and realize once again the small price of baldness.
A small feisty woman I guess to be in her seventies joins us. A patient I cannot see comments he hasn't seen her in a while. "I quit," she said, "I gave my body a break, but they called and said it was time to get started again, so here I am. What do you think of the new place?" she asks then answers her own question before he has a chance, "I think it's terrible!" "Helen, are you behaving yourself?" asks the nurse. "No!" she answers offering chocolates from a large box to the patients. She shoves the box at the nurse. "You ask the others," she says, "I'm too tired." She plomps into the only vacant chair. "I was hoping the chairs would be full and they'd send me home." "You keeping busy?" A man's voice behind the partition asks her. "I've got a busy week," Helen says, "I see the dentist on Monday and the priest on Tuesday. I haven't been to confession for a while. Don't have much to tell him. You gonna give me a DVD player to shut me up?" She asks the nurse hooking her up to an IV. "There's a movie I want to see that'll give me something to tell the priest." The nurse giggles, sets her up and Helen quiets down.
The Benedryl is making me sleepy but I'm too nosy to sleep. There are too many lives to observe. These partitions make eavesdropping legal.
My nutritionist told me to drink lots of water to flush the poison out of my system so I'm making numerous trips to the Restroom dragging my IV tubes, infusion bags and the pole they're suspended from behind me like an unwelcome pest. The Taxotere bag is almost empty - maybe 20 more minutes worth and then only two chemos left! Yeah! It's not so bad really. I heard cancer clinics in Nevada were closed and patients were having to go outside their state. I'm grateful for the opportunity to have this treatment.
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!
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 26th 2008, Merry Christmas
What a thought! How desolate a life without the hope of Christ! How hopeless the ways of men left to their own design! The further this nation, this world, drifts from Christ as our pillar - the clearer the picture of what a Christ-less world would look like. Does Allah redeem us from our sin? Will Buddha save us from ourselves?
But rejoice! He did come! He came and instructed us on how to live in humility and love, with forgiving hearts, doing good and proclaiming The Way! Praise His Name! Wonderful, Counsellor, Prince of Peace, Almighty God!
I love the story of a Christ-converted Buddhist who was asked to explain his change of heart. "I was drowning," he said. "Buddha stood at the water's edge and instructed me on how to swim. Then he walked away saying it was my own journey. Then Christ swam out, rescued me, taught me how to swim, then sent me out to help save others."
Oh happy day, when Jesus came! Merry merry Christ-mas!
But rejoice! He did come! He came and instructed us on how to live in humility and love, with forgiving hearts, doing good and proclaiming The Way! Praise His Name! Wonderful, Counsellor, Prince of Peace, Almighty God!
I love the story of a Christ-converted Buddhist who was asked to explain his change of heart. "I was drowning," he said. "Buddha stood at the water's edge and instructed me on how to swim. Then he walked away saying it was my own journey. Then Christ swam out, rescued me, taught me how to swim, then sent me out to help save others."
Oh happy day, when Jesus came! Merry merry Christ-mas!
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'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!
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.
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 enoucgh 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.
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 enoucgh 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
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.
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!
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 day
O 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.
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 day
O 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.
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.
Kathleen
"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
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.
Kathleen
"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
November 3rd 2008, Pathology Report
Dr. Corn just called with the pathology report. Cancer was found in the one sentinel node only. The other four they tested were clear which was thrilling news. She doesn't have to go back in to remove nodes, she removed the sentinel and all surrounding tissue. I'm so happy although I was prepared to hear worse news and not be too upset by it.
There's a woman who runs the Iditarod, a dog sledding race in Alaska, who's had a double mastectomy and 22 nodes removed. I figured I could deal with it either way but its nice to get good news.
There's a woman who runs the Iditarod, a dog sledding race in Alaska, who's had a double mastectomy and 22 nodes removed. I figured I could deal with it either way but its nice to get good news.
October 30th 2008, Surgery, Hospital stuff and Home
THURSDAY. Home again. One sleepless night in the hospital is enough. My husband is beyond exhaustion. His task is difficult. He feels so responsible for my care and I suppose he is.
TUESDAY. Today we met with Dr. Mosharrafa, my young blue-eyed plastic surgeon in Phoenix. He specializes in mastectomy reconstruction and is gifted with the necessary manner to deal with women faced with this option. I'm so grateful I've found him. He draws lines across my chest as I stand naked before him, my husband looking on with keen interest in the details. Shoyei asks the questions of a detached medical student and Dr. Mosharrafa enthusiastically responds. I feel like a class project. The lines are for my oncology surgeon, Dr. Corn, to follow when performing my double mastectomy tomorrow. It's like laying pattern pieces out on the fabric of my skin. A few bold pen strokes and he has marked out a plan for the new me. Like a visit to my tailor. Reconstruct - to build up, as from remains, an image of the original. Perfect. When Dr. Mosharaffa inserts the expanders and sews me up, I think to myself, I will be well along in the process of rebuilding Katrina(Spanish for Kathleen) after hurricane Cancer. I smirk at my private little joke while the boys are discussing the procedure as if I'm not there. Shoyei inquires as to his chances of being in the OR to watch. I raise an eyebrow knowing he can't stand the sight of blood. Fortunately, for all, its not an option.
Afterwards, Shoyei and I meet a dear friend who happens to be in town. We wander in Old Towne Scottsdale and find a great little restaurant where we dine on elegant salads and catch up in the intimate manner of old friends - a delightful diversion which takes my mind off tomorrow.
WEDNESDAY. I've slept well but Shoyei has been up since 3AM. We get ready in silence and then we are off to Thompson's Peak Hospital, a new hospital with state-of-the-art equipment and patient comforts. I was there for my port implant and have almost looked forward to another visit. I'm quickly ushered into radiology where the male attendants are disappointingly cold and impersonal despite the fact they refer to me as "dear". I overhear enough to know they are afraid of a chewing out by the radiologist. "Where are your mammograms?" I'm queried in a you-forgot-your-homework-again tone."My mammograms? What? No one asked for them. Why? Nothing showed up on my mammograms," I explain. "The radiologist is going to want to see those mammograms" I'm told."The ones that show nothing?" I ask. "He's here," they say softly. I hear him ask to see the mammogram and their whispered response. He marches to my side where I lie in undignified repose. "No mammograms." He says. I'm not sure if its a question or a statement but I explain their uselessness. Nonplussed, he seguays to the subject at hand, leaving me wondering at the twittering techies.
"I'm going to inject four shots into your right breast. We don't anesthetize for this because that would still mean four stings," he says. After the first injection I tell him I didn't feel a thing. "I'll try harder next time," he says. I appreciate his effort at humor in this humorless place. The injections are radioactive isotopes. This is a "sentinel node" procededure to locate which lymph node guards the path to the whole chain of nodes under my right arm. The table I'm on glides feet first into position for pictures. Turns out I have two sentries. No one says if this is a good thing or bad. The radiologist runs a geiger counter over the nodes and adds two more marks to my tattooed chest. I later learn Dr. Corn is annoyed by this over stepping of her power. Apparently politics abound even in hospitals.
I'm taken upstairs to Pre-Op by wheelchair, my husband taking over the sentry role. What is the deal with hospitals not letting you walk on your own volition when you're able and then making you amble about when you don't fell up to it? My assigned nurse here is a gem. She's exudes warmth and competence and I find myself relaxing. I'm outfitted in my hospital gown, socks, an IV is started and Shoyei and I settle in for a two hour wait. Dr. Corn, the OR nurse and anesthesiologist stop by one at a time to check in with me. I'm amazed at the peace I feel. When noone is looking. I take one last peek down my gown at the part of me about to be cut away. "Farewell," I whisper wistfully. I glance at my husband. He looks afraid and I pray for him. I'm so sad he's refused all offers of company for his waiting but he's adamant about preferring to going it alone. The anesthesiologist is ready to take me. "Now's the time for the hug and kiss" he tells Shoyei. I'm surprised to feel my face crumple as we cling to each other. It's the last I remember until I awake in recovery.
Recovery is the hard part. They are under staffed today, they tell me. I'm in pain and unable to position myself for relief in the bed. The nurses are overwhelmed and impatient. They are in the ninth and tenth hours of their twelve hour shifts. Its unrealistic of me to expect the best of them. I'm given a pain killer which quiets me down. I'm kept waiting and waiting because there are no rooms ready (because they are short handed there too?) which for these nurses means double the patient load. I can hear another patient coughing and the distress is is causing her. They are comforting her. Suck it up I tell myself but the drugs render me weak and selfish. I seek the comfort of my Lord and He is there but I am concerned about my husband and anxious to see my daughter. It has been hard for Shoyei to let me out of his sight. My protector. I hear a recovery room nurse taking a call. She is explaining to my husband why I am still here where he cannot be with me.
Finally, I'm wheeled to my room where my husband, daughter and son-in-law are waiting. I am so happy to see them so why am I still so irritable. It took me so long to get into a semi-comfortable position my room nurse wants to make me "more comfortable". I just want her to leave me alone. Actually I want her to leave completely. Shoyei is all the nurse I need. I'm "under the influence" and behaving badly. I hear my daughter apologizing for me. "Did you know my mother before?" she asks, "because, this is not how she normally acts." "I'm embarrassing you," I say. Shoyei makes a stab at a joke and I tell him to drop the jokes for a while. They're annoying me. Later I'm mortified, tearful and ashamed apologize to everyone.
Shoyei shares the doctors post-op reports. They are both giddy with excitement at how well I've done. It's good to know I behaved during surgery. Dr. Mosharaffa has inflated my tissue expanders halfway already which had not been his intention "because her muscle is so strong". Must be all that protein I've been eating. It also explains why I feel as if I have a rubberband around my chest. The expanders are under muscle.
.The new nurse, Shelli, seems on guard, as if she's been warned. But I start off by telling her how out of control I feel. "It's normal," she says, "the anesthetic does that". She's beginning her shift and appears to be conserving her energy. She gets me settled. I eat a little but fail to keep it down. My husband holds the bucket. For better or for worse, he's pulling his end.
I feel myself again, my alter ego has thankfully gone missing. The pain is under control and I'm sleepy. The nurse helps my husband convert the couch into a bed, gives him sheets, blanket and a pillow and he collapses for about 3 hours. I smile with gratitude for his soft snoring. I try to doze off but there are pressure "socks" alternately massaging one leg then the other every 10 seconds to prevent blood clots. My "vitals" are monitored throughout the long sleepless night. At 3AM I need to use the bathroom and call for Shoyei's help. He calls for the nurse to help us with the tubes. She comes to help, instructing me to put my weight on the bed rail, which collapses sending pain up my torso and her tripping past my husband. No harm done, we all laugh. Through the night she forgets to restart my pressure socks, put on my oxygen tube and re plug my IV drip after I use the bathroom. She's annoyed at first when I call each time to ask about these things then acknowledges "we" forgot to reconnect you. She's lovable but I'd like to go find that pre-op nurse. I finally sleep from 5:15 to 6:15 when an attendant attempts to slap a blood pressure cuff on my arm after loudly announcing "sorry to wake you". He missed the big sign on my board saying no blood pressure readings from either arm. "Oh yeah," he remembers, "I saw that on your chart". I ask for a pain pill. "I'll let Kelly know,"he says. "Who's Kelly?" I ask.
My husband is getting breakfast I'm told. I'm hungry and wonder when breakfast is served. I turn on the flatscreen TV and discover the coolest thing about this hospital. I hit menu and order oatmeal, brown sugar, milk, berries and an english muffin.
Dr. Corn pops in, loosens my bandage(I finally take a full breath) and signs my release. My delicious hot breakfast arrives and I am thinking about staying one more night. Until Kelly shows up. He's not mean but right up until I'm released no shadow of a smile attempts to brighten his face. I am so anxious to get home.
HOME. Shoyei gets me settled experimenting with the right pillows to make me as comfortable as possible. I absolutely cannot imagine a gentler, more conscientious nurse than Shoyei is being. He is grouchy but mighty short on sleep. His is a volunteer position. I take in the beautiful view out my window and the two vases of flowers each of my children have given me. My daughter and her husband are here to help. My mother is here. My family has called and friends email their love. I feel cherished and very grateful.
TUESDAY. Today we met with Dr. Mosharrafa, my young blue-eyed plastic surgeon in Phoenix. He specializes in mastectomy reconstruction and is gifted with the necessary manner to deal with women faced with this option. I'm so grateful I've found him. He draws lines across my chest as I stand naked before him, my husband looking on with keen interest in the details. Shoyei asks the questions of a detached medical student and Dr. Mosharrafa enthusiastically responds. I feel like a class project. The lines are for my oncology surgeon, Dr. Corn, to follow when performing my double mastectomy tomorrow. It's like laying pattern pieces out on the fabric of my skin. A few bold pen strokes and he has marked out a plan for the new me. Like a visit to my tailor. Reconstruct - to build up, as from remains, an image of the original. Perfect. When Dr. Mosharaffa inserts the expanders and sews me up, I think to myself, I will be well along in the process of rebuilding Katrina(Spanish for Kathleen) after hurricane Cancer. I smirk at my private little joke while the boys are discussing the procedure as if I'm not there. Shoyei inquires as to his chances of being in the OR to watch. I raise an eyebrow knowing he can't stand the sight of blood. Fortunately, for all, its not an option.
Afterwards, Shoyei and I meet a dear friend who happens to be in town. We wander in Old Towne Scottsdale and find a great little restaurant where we dine on elegant salads and catch up in the intimate manner of old friends - a delightful diversion which takes my mind off tomorrow.
WEDNESDAY. I've slept well but Shoyei has been up since 3AM. We get ready in silence and then we are off to Thompson's Peak Hospital, a new hospital with state-of-the-art equipment and patient comforts. I was there for my port implant and have almost looked forward to another visit. I'm quickly ushered into radiology where the male attendants are disappointingly cold and impersonal despite the fact they refer to me as "dear". I overhear enough to know they are afraid of a chewing out by the radiologist. "Where are your mammograms?" I'm queried in a you-forgot-your-homework-again tone."My mammograms? What? No one asked for them. Why? Nothing showed up on my mammograms," I explain. "The radiologist is going to want to see those mammograms" I'm told."The ones that show nothing?" I ask. "He's here," they say softly. I hear him ask to see the mammogram and their whispered response. He marches to my side where I lie in undignified repose. "No mammograms." He says. I'm not sure if its a question or a statement but I explain their uselessness. Nonplussed, he seguays to the subject at hand, leaving me wondering at the twittering techies.
"I'm going to inject four shots into your right breast. We don't anesthetize for this because that would still mean four stings," he says. After the first injection I tell him I didn't feel a thing. "I'll try harder next time," he says. I appreciate his effort at humor in this humorless place. The injections are radioactive isotopes. This is a "sentinel node" procededure to locate which lymph node guards the path to the whole chain of nodes under my right arm. The table I'm on glides feet first into position for pictures. Turns out I have two sentries. No one says if this is a good thing or bad. The radiologist runs a geiger counter over the nodes and adds two more marks to my tattooed chest. I later learn Dr. Corn is annoyed by this over stepping of her power. Apparently politics abound even in hospitals.
I'm taken upstairs to Pre-Op by wheelchair, my husband taking over the sentry role. What is the deal with hospitals not letting you walk on your own volition when you're able and then making you amble about when you don't fell up to it? My assigned nurse here is a gem. She's exudes warmth and competence and I find myself relaxing. I'm outfitted in my hospital gown, socks, an IV is started and Shoyei and I settle in for a two hour wait. Dr. Corn, the OR nurse and anesthesiologist stop by one at a time to check in with me. I'm amazed at the peace I feel. When noone is looking. I take one last peek down my gown at the part of me about to be cut away. "Farewell," I whisper wistfully. I glance at my husband. He looks afraid and I pray for him. I'm so sad he's refused all offers of company for his waiting but he's adamant about preferring to going it alone. The anesthesiologist is ready to take me. "Now's the time for the hug and kiss" he tells Shoyei. I'm surprised to feel my face crumple as we cling to each other. It's the last I remember until I awake in recovery.
Recovery is the hard part. They are under staffed today, they tell me. I'm in pain and unable to position myself for relief in the bed. The nurses are overwhelmed and impatient. They are in the ninth and tenth hours of their twelve hour shifts. Its unrealistic of me to expect the best of them. I'm given a pain killer which quiets me down. I'm kept waiting and waiting because there are no rooms ready (because they are short handed there too?) which for these nurses means double the patient load. I can hear another patient coughing and the distress is is causing her. They are comforting her. Suck it up I tell myself but the drugs render me weak and selfish. I seek the comfort of my Lord and He is there but I am concerned about my husband and anxious to see my daughter. It has been hard for Shoyei to let me out of his sight. My protector. I hear a recovery room nurse taking a call. She is explaining to my husband why I am still here where he cannot be with me.
Finally, I'm wheeled to my room where my husband, daughter and son-in-law are waiting. I am so happy to see them so why am I still so irritable. It took me so long to get into a semi-comfortable position my room nurse wants to make me "more comfortable". I just want her to leave me alone. Actually I want her to leave completely. Shoyei is all the nurse I need. I'm "under the influence" and behaving badly. I hear my daughter apologizing for me. "Did you know my mother before?" she asks, "because, this is not how she normally acts." "I'm embarrassing you," I say. Shoyei makes a stab at a joke and I tell him to drop the jokes for a while. They're annoying me. Later I'm mortified, tearful and ashamed apologize to everyone.
Shoyei shares the doctors post-op reports. They are both giddy with excitement at how well I've done. It's good to know I behaved during surgery. Dr. Mosharaffa has inflated my tissue expanders halfway already which had not been his intention "because her muscle is so strong". Must be all that protein I've been eating. It also explains why I feel as if I have a rubberband around my chest. The expanders are under muscle.
.The new nurse, Shelli, seems on guard, as if she's been warned. But I start off by telling her how out of control I feel. "It's normal," she says, "the anesthetic does that". She's beginning her shift and appears to be conserving her energy. She gets me settled. I eat a little but fail to keep it down. My husband holds the bucket. For better or for worse, he's pulling his end.
I feel myself again, my alter ego has thankfully gone missing. The pain is under control and I'm sleepy. The nurse helps my husband convert the couch into a bed, gives him sheets, blanket and a pillow and he collapses for about 3 hours. I smile with gratitude for his soft snoring. I try to doze off but there are pressure "socks" alternately massaging one leg then the other every 10 seconds to prevent blood clots. My "vitals" are monitored throughout the long sleepless night. At 3AM I need to use the bathroom and call for Shoyei's help. He calls for the nurse to help us with the tubes. She comes to help, instructing me to put my weight on the bed rail, which collapses sending pain up my torso and her tripping past my husband. No harm done, we all laugh. Through the night she forgets to restart my pressure socks, put on my oxygen tube and re plug my IV drip after I use the bathroom. She's annoyed at first when I call each time to ask about these things then acknowledges "we" forgot to reconnect you. She's lovable but I'd like to go find that pre-op nurse. I finally sleep from 5:15 to 6:15 when an attendant attempts to slap a blood pressure cuff on my arm after loudly announcing "sorry to wake you". He missed the big sign on my board saying no blood pressure readings from either arm. "Oh yeah," he remembers, "I saw that on your chart". I ask for a pain pill. "I'll let Kelly know,"he says. "Who's Kelly?" I ask.
My husband is getting breakfast I'm told. I'm hungry and wonder when breakfast is served. I turn on the flatscreen TV and discover the coolest thing about this hospital. I hit menu and order oatmeal, brown sugar, milk, berries and an english muffin.
Dr. Corn pops in, loosens my bandage(I finally take a full breath) and signs my release. My delicious hot breakfast arrives and I am thinking about staying one more night. Until Kelly shows up. He's not mean but right up until I'm released no shadow of a smile attempts to brighten his face. I am so anxious to get home.
HOME. Shoyei gets me settled experimenting with the right pillows to make me as comfortable as possible. I absolutely cannot imagine a gentler, more conscientious nurse than Shoyei is being. He is grouchy but mighty short on sleep. His is a volunteer position. I take in the beautiful view out my window and the two vases of flowers each of my children have given me. My daughter and her husband are here to help. My mother is here. My family has called and friends email their love. I feel cherished and very grateful.
October 29th 2008, Day of Surgery
I awake after a good night's sleep and begin praising the Lord for my peace and joy. I am fully prepared, buoyed on the prayer of the saints - thank you! Only the grace of God can account for the incredible excitement I feel! Thank You Lord for the gift of wisdom and skillfulness you've imparted to my doctors. Thank You for this incredible opportunity for healing through medicine and prayer!
On Monday I woke upon seeking God and not sensing His presence. Where are You? I need You now. I went to His Word. "I am not alone for my Father is with me" John 18:32. There You are! I picked up my Blackberry and a friend encouraged me from His Word, "Blessed shall you be when you come in, and blessed shall you be when you go out... The Lord will command the blessing on you in your storehouses and into all to which you set your hand... and the Lord will grant you plenty of goods, in the fruit of your body...." I went to work and friends there prayed for me. There You are! I opened my mail from an elder. Sweet and tender words tell me You are pleased with me. There You are! A woman from my new church whom I've never met called to arrange delivering a meal. There You are! Another calls in the evening to pray with me. I've not met her yet either. Family an friends call and send me morsels of Your Word. I smile. Lord, thank You. I saw you everywhere!
This is the most wonderful journey. You are my trail guide and my eyes are upon You.I praise Your Holy Name - my sweet Lord.
On Monday I woke upon seeking God and not sensing His presence. Where are You? I need You now. I went to His Word. "I am not alone for my Father is with me" John 18:32. There You are! I picked up my Blackberry and a friend encouraged me from His Word, "Blessed shall you be when you come in, and blessed shall you be when you go out... The Lord will command the blessing on you in your storehouses and into all to which you set your hand... and the Lord will grant you plenty of goods, in the fruit of your body...." I went to work and friends there prayed for me. There You are! I opened my mail from an elder. Sweet and tender words tell me You are pleased with me. There You are! A woman from my new church whom I've never met called to arrange delivering a meal. There You are! Another calls in the evening to pray with me. I've not met her yet either. Family an friends call and send me morsels of Your Word. I smile. Lord, thank You. I saw you everywhere!
This is the most wonderful journey. You are my trail guide and my eyes are upon You.I praise Your Holy Name - my sweet Lord.
October 10th 2008, In the Chair Again
I am awaiting my first of the second half of chemo treatmets - the "easy half". My blood count is good so I can proceed. My hands have healed just in time. I confess, I was hoping for a break but I know this is best for me. The anti-nausea drip is going. It always precedes the chemo. I read that it takes hundreds of California yew trees to treat one patient with Taxol - the derivative of its bark. I feel very guilty and very ungreen.
I've been told within the first few minutes I may feel flushed or have severe back pain or shortness of breath. The nurse has just switched out the last bag for one with Benedryl(antihistamine) and Tagamet(antiacid). Seems they're preparing me for all possibilities. I'm apprehensive this time. Please Lord still this heart. I know You are with me.
I search out bible verses on my Blackberry as they start the real thing(they all look like water to me). A verse I've used as a bookmark in the novel I'm reading slips out. I realize I wrote this out for such a time as this:
Isaiah 43:13 says "For I am the Lord your God, who takes hold of your right hand and says to you, Do not fear: I will help you."
Isaiah 43:2-3a -"When you pass through waters, I will be with you, and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour."
I read these and then I fall asleep.
Two hours and NO REACTIONS later, I awake. I want to weep with God's swift response to my cry and your prayers for me. He is near indeed.
I feel the need to say I write to encourage you with the real-ness of our God. I don't want this to be about me. You all have your own trials and I hope some of what I share will make a differnce for you.
I've been told within the first few minutes I may feel flushed or have severe back pain or shortness of breath. The nurse has just switched out the last bag for one with Benedryl(antihistamine) and Tagamet(antiacid). Seems they're preparing me for all possibilities. I'm apprehensive this time. Please Lord still this heart. I know You are with me.
I search out bible verses on my Blackberry as they start the real thing(they all look like water to me). A verse I've used as a bookmark in the novel I'm reading slips out. I realize I wrote this out for such a time as this:
Isaiah 43:13 says "For I am the Lord your God, who takes hold of your right hand and says to you, Do not fear: I will help you."
Isaiah 43:2-3a -"When you pass through waters, I will be with you, and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour."
I read these and then I fall asleep.
Two hours and NO REACTIONS later, I awake. I want to weep with God's swift response to my cry and your prayers for me. He is near indeed.
I feel the need to say I write to encourage you with the real-ness of our God. I don't want this to be about me. You all have your own trials and I hope some of what I share will make a differnce for you.
October 9th 2008, Marilyn, the girls and me
When my younger brother was very small he pointed at a framed photo hanging in my father's home office and declared "Mommy"! Only it wasn't our mother. It was a nude Marilyn Monroe in all her well endowed glory. It hung there for many years unapologetically setting the bar for my sister and I and I suppose my brother. That it seems wholly inappropriate in hindsight to display such a photo with all the respectability the title "pin-up girl" could offer before the eyes of young children is an understatement. The subtlety with which that photo embedded our forming views of what standard was acceptable to attract the affections of the opposite sex was very effective. To be fair, my father was not alone. Post World War II movies often depicted the scantily clad pin-up girls as a sailor's reminder of what he was fighting for. My role was cast. I only had to grow into it.
I was twelve when my mother purchased my first "training" bra and though it was unclear to me what was being trained, my girlfriends and I faithfully practiced a bust developing exercise to the chant: "We must, we must, we must improve our bust. 'Tis better, 'tis better, 'tis better for the sweater." Some girls resorted to stuffing their bras with socks but I resisted this trend after observing with horror a sock escaping its restraint and poking its way out of my friend's blouse. I would let nature take its course and throw in a few extra chants for good measure.
My posture improved dramatically over the next few years as I thrust my chest out in an effort to draw attention and admiration for my developing form. And I was not without success. Cat whistles confirmed I was growing into the young women my father could be proud of. To be fair, I don't believe this was ever my father's thought but it was definitely the unintentional effect.
It was too late for me by the time "Twiggy" reached cover girl status. The popular "skinny" model didn't fool me. I knew what boys liked so it came as no surprise when Twiggy was replaced by the likes of Raquel Welch, whose poster now adorned my brother's room with my father's snickering approval. Try as they might, the feminists had failed to stuff Marilyn back into Pandora's Box. That her life ended in misery from all the wrong attention was unsurprising. If the bra burning 70’s were supposed to make some statement of liberation, I was lost on me.
At the age of 18, my first breast lump appeared and I was hospitalized at Stanford, a teaching hospital, for a biopsy. Imagine my horror when a group of gawking med students came into my room to "observe my condition". With attention I hadn't bargained for my breasts were now the source of clinical curiosity. I escaped the experience intact with only slightly bruised dignity.
Breasts took on a new purpose with children. New to me that is. That I was equipped to nurture my babies providing their sole sustenance was a marvel to me. It was both humbling and empowering to be their source of survival. The days I held my children to my breast are the most precious of memories.
I never achieved "Marilyn" standards for which I am not unhappy. At this later stage of life the fascination is lost on me. I tried to present a different standard for my children although the battle is largely cultural. It always was I guess but I can attest to the role a father plays with sons and especially daughters in setting beauty standards. My mother recited "pretty is as pretty does" throughout my childhood but my father’s open admiration of Marilyn's unwittingly spoke a thousand words.
Now I face their removal, the "girls" are going away. The big scary word ‘Mastectomy’ that once struck horror in my soul is now an imminent fact on my horizon. I find myself grateful they are not the major part of my identity they once seemed, that this is taking place now instead of twenty or thirty years ago and that I didn’t miss the baby bonding pleasure. But most of all, I am grateful to have a husband who bravely faces this with me as it will be his loss also. They will be replaced by perky imposters; I've permitted myself this vanity. It will be my effort to feel normal again and to one day put this all behind me.
I was twelve when my mother purchased my first "training" bra and though it was unclear to me what was being trained, my girlfriends and I faithfully practiced a bust developing exercise to the chant: "We must, we must, we must improve our bust. 'Tis better, 'tis better, 'tis better for the sweater." Some girls resorted to stuffing their bras with socks but I resisted this trend after observing with horror a sock escaping its restraint and poking its way out of my friend's blouse. I would let nature take its course and throw in a few extra chants for good measure.
My posture improved dramatically over the next few years as I thrust my chest out in an effort to draw attention and admiration for my developing form. And I was not without success. Cat whistles confirmed I was growing into the young women my father could be proud of. To be fair, I don't believe this was ever my father's thought but it was definitely the unintentional effect.
It was too late for me by the time "Twiggy" reached cover girl status. The popular "skinny" model didn't fool me. I knew what boys liked so it came as no surprise when Twiggy was replaced by the likes of Raquel Welch, whose poster now adorned my brother's room with my father's snickering approval. Try as they might, the feminists had failed to stuff Marilyn back into Pandora's Box. That her life ended in misery from all the wrong attention was unsurprising. If the bra burning 70’s were supposed to make some statement of liberation, I was lost on me.
At the age of 18, my first breast lump appeared and I was hospitalized at Stanford, a teaching hospital, for a biopsy. Imagine my horror when a group of gawking med students came into my room to "observe my condition". With attention I hadn't bargained for my breasts were now the source of clinical curiosity. I escaped the experience intact with only slightly bruised dignity.
Breasts took on a new purpose with children. New to me that is. That I was equipped to nurture my babies providing their sole sustenance was a marvel to me. It was both humbling and empowering to be their source of survival. The days I held my children to my breast are the most precious of memories.
I never achieved "Marilyn" standards for which I am not unhappy. At this later stage of life the fascination is lost on me. I tried to present a different standard for my children although the battle is largely cultural. It always was I guess but I can attest to the role a father plays with sons and especially daughters in setting beauty standards. My mother recited "pretty is as pretty does" throughout my childhood but my father’s open admiration of Marilyn's unwittingly spoke a thousand words.
Now I face their removal, the "girls" are going away. The big scary word ‘Mastectomy’ that once struck horror in my soul is now an imminent fact on my horizon. I find myself grateful they are not the major part of my identity they once seemed, that this is taking place now instead of twenty or thirty years ago and that I didn’t miss the baby bonding pleasure. But most of all, I am grateful to have a husband who bravely faces this with me as it will be his loss also. They will be replaced by perky imposters; I've permitted myself this vanity. It will be my effort to feel normal again and to one day put this all behind me.
October 7th 2008, Random thoughts
If you saw the movie The Perfect Storm, you'll remember how many conditions were met to cause one moment in time where a terrible and powerful storm gathered over the North Atlantic. Everything was in the timing.
I truly believe God has healed me through the hands of some precious saints, though only time will tell. Truthfully that's what makes it a bit frustrating to have to go forward with all the remaining treatment. But I have believed for some time it might be necessary to endure the full program in order to effectively minister to others who go through this. So I will run the good race for my Lord.
I've been wondering if my tenacious clinging to life is an indication of weak faith. Why do we fight so hard to postpone our entry to heaven? It seems somehow strange. But God created me this way. Ecclesiastes 3:11 says He "set eternity" in our hearts. We have a "forever" outlook but are unable to see that transition wall, so to speak, where we cross over from our earthly lives to our heavenly ones.
It is good to think about our moment in time on earth.
When I was awaiting the diagnosis of my cancer - does she or doesn't she - I picked up a book titled "One Month to Live"(sounds like a soap opera). I asked myself, "What would I do if I knew I only had one month to live?". I found it hard to answer unless you actually have been given such news. And once I heard the word "cure" I lost the clarity of possibilities. It's pretty hard to focus on living well and dying well at the same time.
Shortly before this cancer adventure began, a lot of changes took place in my life which looking back, I realize now, were preparing me for this time. It was a difficult and painful time, but I saw God's hand burning away the dross of my life. I didn't understand at first - the importance of letting go of my plans. But He knew, for such a time as this, I would hold up better without the baggage. So I opened my hands and let go. I gave Him all of me. That was in April. Two months before my big news. Perfect timing for my perfect storm.
As I said - random thoughts.
I truly believe God has healed me through the hands of some precious saints, though only time will tell. Truthfully that's what makes it a bit frustrating to have to go forward with all the remaining treatment. But I have believed for some time it might be necessary to endure the full program in order to effectively minister to others who go through this. So I will run the good race for my Lord.
I've been wondering if my tenacious clinging to life is an indication of weak faith. Why do we fight so hard to postpone our entry to heaven? It seems somehow strange. But God created me this way. Ecclesiastes 3:11 says He "set eternity" in our hearts. We have a "forever" outlook but are unable to see that transition wall, so to speak, where we cross over from our earthly lives to our heavenly ones.
It is good to think about our moment in time on earth.
When I was awaiting the diagnosis of my cancer - does she or doesn't she - I picked up a book titled "One Month to Live"(sounds like a soap opera). I asked myself, "What would I do if I knew I only had one month to live?". I found it hard to answer unless you actually have been given such news. And once I heard the word "cure" I lost the clarity of possibilities. It's pretty hard to focus on living well and dying well at the same time.
Shortly before this cancer adventure began, a lot of changes took place in my life which looking back, I realize now, were preparing me for this time. It was a difficult and painful time, but I saw God's hand burning away the dross of my life. I didn't understand at first - the importance of letting go of my plans. But He knew, for such a time as this, I would hold up better without the baggage. So I opened my hands and let go. I gave Him all of me. That was in April. Two months before my big news. Perfect timing for my perfect storm.
As I said - random thoughts.
September 25th 2008, Thoughts on 4th day of Chemo
Did I mention my aversion to boredom? Well, these doctors keep things changing. I asked Dr. Kato, since he didn't plan my therapy, did he agree with it. He said he did believe in neoadjuvent therapy(chemo before surgery) but he would have preferred a three week schedule rather than a two week schedule to give my body a better chance to recover between. So I feel especially blessed that I have done so well. And, he said, since it appears my lymph nodes have shrunk already, he'd like for me to go ahad and have my surgery. so three weeks from today(I'm now receiving what I pray will be my last AC cocktail - the last of the "bad ones") and then reume the remaining four treatments as a "clean-up". Makes sense. I like his plan. But it threw me.
When I was 18, my annual tip to the doctor revealed a lump. I remember it was Monday. The doctor scheduled to put me in the hospital Tuesday night to operate Wednesday morning. I still remember thinking I wasn't old enough to schedule that appointment without my parents.40 years ago SOP called for putting me to sleep, taking a biopsy, sending it to the lab while still under anesthesia, and if it was positive, to perform a radical mastectomy on the spot. That Wednesday morning, when I awoke from surgery, I reached for my heavily bandaged breast. a nurse rushed over, grabbed my hand and smiled. "You're all in one piece," she said. Ah sweet reprieve.
Not to be repeated, Shoyei and I have just had back-to-back visits with my cancer surgeon and plastic surgeon. I am further encouraged. My surgeon is encouraged. She can't feel a thing! The chemohas done its job and there is the possibility the lymph nodes will be clear. She will take about 5 of the 50+ nodes to test. 3 or less with cancer could mean no radiation. The reconstruction will begin immediately. So now I await a dat for the big "M". And though I don't need someone to arrange for my surgery, I still feel unqualified toauthorize thisplan. /though I've had 3 months to get used to the idea, I suffer from Scarlett O'Hara syndrome. I don't want to think about it today. "I'll think about it tomorrow."
One mor month to wrap my head around the reality of double mastectomies. I remind mhself there is so much to be grateful for. This surgery can save my life. I'm 57 this time, not 18. I think of young women who've not yet had or raised their children or the many for whom no options remain.
I am grateful for the chance to live and serve and this sacrifice of flesh a small price. So okay now. I'm ready. More or less(no pun intended).
When I was 18, my annual tip to the doctor revealed a lump. I remember it was Monday. The doctor scheduled to put me in the hospital Tuesday night to operate Wednesday morning. I still remember thinking I wasn't old enough to schedule that appointment without my parents.40 years ago SOP called for putting me to sleep, taking a biopsy, sending it to the lab while still under anesthesia, and if it was positive, to perform a radical mastectomy on the spot. That Wednesday morning, when I awoke from surgery, I reached for my heavily bandaged breast. a nurse rushed over, grabbed my hand and smiled. "You're all in one piece," she said. Ah sweet reprieve.
Not to be repeated, Shoyei and I have just had back-to-back visits with my cancer surgeon and plastic surgeon. I am further encouraged. My surgeon is encouraged. She can't feel a thing! The chemohas done its job and there is the possibility the lymph nodes will be clear. She will take about 5 of the 50+ nodes to test. 3 or less with cancer could mean no radiation. The reconstruction will begin immediately. So now I await a dat for the big "M". And though I don't need someone to arrange for my surgery, I still feel unqualified toauthorize thisplan. /though I've had 3 months to get used to the idea, I suffer from Scarlett O'Hara syndrome. I don't want to think about it today. "I'll think about it tomorrow."
One mor month to wrap my head around the reality of double mastectomies. I remind mhself there is so much to be grateful for. This surgery can save my life. I'm 57 this time, not 18. I think of young women who've not yet had or raised their children or the many for whom no options remain.
I am grateful for the chance to live and serve and this sacrifice of flesh a small price. So okay now. I'm ready. More or less(no pun intended).
October 3rd 2008, A New Plan
I was delighted after my 4th chemo to feel so good. I felt "normal". Until the 5th day. On the 5th day the palms of my hands became sensitive and by yesterday(day 8) they felt like they were on fire and hyper sensitive. Everything I did caused searing pain.
I was anxious to see Dr. Kato this morning. He answered lots of questions. He gave me some cream for my hands which has already helped. He said this needs to be cleared up before I start my new Taxol treatments. I've finished the drug that caused this problem so it should be cleared up by then. I keep reminding myself this is small potatoes but this one got me down. He also told me the "sugar feeds cancer" hype is a myth. So I'm going to cave into my ice cream craving.
I'm cranky today. I allow myself this. Now for the big question which preceded his good and bad answer. "So, Dr. Kato, Dr. Corn says if she can't see any cancer when she does my surgery and three or less lymph nodes show cancer, she can't see any reason for radiation. Do you agree?" He hesitates before answering. I think he's measuring his thoughts before speaking, not wanting to show disrespect for Dr. Corn's comments but I see it in the shadow that crosses his face. "What you have is curable," he says. "We've reduced your cancer with the chemo. You'll have surgery and then we'll complete your chemo as a cleanup. The chemo has treated your cancer locally but it's also moving throughout your body preventing it from metasticizing anywhere else. The radiation is local and will eliminate any remaining microscopic localized cancer. Then your done and have little concern about it ever returning. Let's do everything we can to end your cancer experience once and for all." So the bad news is I don't get to skip radiation but the good news is I can expect to be cured. So why am I crying? So many emotions.
Last night I kicked the covers off in a hotflash. A few moments later I awoke shivering but my hands were on fire. I reached down to pull up the comforter which set me tailspinning into shafts of pain radiating from both hands. I felt my husband's hand lovingly squeeze the achilles tendon of my left foot through the covers. I looked up but no one was there. My husband was sound asleep facing away from me. "Lord?" I silently asked and knew He was with me. I remember reading John Piper's '90 Minutes in Heaven'. He was trapped in the wreckage of his car and later thanked a man for holding his hand while he waited to be extracted. The man told him he hadn't, it hadn't even been possible. John knew then who'd held his hand and I know who visited me last night. I am humbled.
I'm anemic so Dr. Kato gave me a shot of Procrit - another miracle drug. Did I tell you? Did you know that the chemo drugs are derivatives of natural plants, mushrooms and trees? Taxol is made from the bark of the California Yew tree. Good of God to provide even this necessary poison.
My surgery is scheduled for October 29th so I have a few weeks to prepare mentally, feast on the Word for fortification.
If my writing seems sort of random - blame it on brain fog. I do.
Thank you for your prayers.
I was anxious to see Dr. Kato this morning. He answered lots of questions. He gave me some cream for my hands which has already helped. He said this needs to be cleared up before I start my new Taxol treatments. I've finished the drug that caused this problem so it should be cleared up by then. I keep reminding myself this is small potatoes but this one got me down. He also told me the "sugar feeds cancer" hype is a myth. So I'm going to cave into my ice cream craving.
I'm cranky today. I allow myself this. Now for the big question which preceded his good and bad answer. "So, Dr. Kato, Dr. Corn says if she can't see any cancer when she does my surgery and three or less lymph nodes show cancer, she can't see any reason for radiation. Do you agree?" He hesitates before answering. I think he's measuring his thoughts before speaking, not wanting to show disrespect for Dr. Corn's comments but I see it in the shadow that crosses his face. "What you have is curable," he says. "We've reduced your cancer with the chemo. You'll have surgery and then we'll complete your chemo as a cleanup. The chemo has treated your cancer locally but it's also moving throughout your body preventing it from metasticizing anywhere else. The radiation is local and will eliminate any remaining microscopic localized cancer. Then your done and have little concern about it ever returning. Let's do everything we can to end your cancer experience once and for all." So the bad news is I don't get to skip radiation but the good news is I can expect to be cured. So why am I crying? So many emotions.
Last night I kicked the covers off in a hotflash. A few moments later I awoke shivering but my hands were on fire. I reached down to pull up the comforter which set me tailspinning into shafts of pain radiating from both hands. I felt my husband's hand lovingly squeeze the achilles tendon of my left foot through the covers. I looked up but no one was there. My husband was sound asleep facing away from me. "Lord?" I silently asked and knew He was with me. I remember reading John Piper's '90 Minutes in Heaven'. He was trapped in the wreckage of his car and later thanked a man for holding his hand while he waited to be extracted. The man told him he hadn't, it hadn't even been possible. John knew then who'd held his hand and I know who visited me last night. I am humbled.
I'm anemic so Dr. Kato gave me a shot of Procrit - another miracle drug. Did I tell you? Did you know that the chemo drugs are derivatives of natural plants, mushrooms and trees? Taxol is made from the bark of the California Yew tree. Good of God to provide even this necessary poison.
My surgery is scheduled for October 29th so I have a few weeks to prepare mentally, feast on the Word for fortification.
If my writing seems sort of random - blame it on brain fog. I do.
Thank you for your prayers.
September 11th 2008, 3rd Chemo Looking back)
I approached my last chemo treatment with all the fortitude I could
muster. My readings and the comments of friends and doctors had
prepared me for the worst. So I laid around for a few days following,
waiting for whatever was going to hit me before I realized I was off
the hook again.
Considering the possibilities, it hardly seems worth mentioning but
within a few days of treatment my hair had thinned to the point it was
time to shave my head. My husband approached this with the solemnity
he felt the occasion required. I had hoped for some levity. Not facing
a mirror, I felt every pass of his electric razor convinced he was
missing spots and fighting the urge to grab it from his hands and do
it myself. When he was finished I took a look. He hadn't missed a
hair. I stared at the image in my mirror with shock at the naked head
staring back. I felt exposed, truly naked and like Eve I wanted to run
from the humiliation of it. My wig, hats and scarves felt horrible
against the short nap of hair remaining so we went back at it with
shaving cream and a razor blade. Now that, without a doubt, is the
strangest physical sensation I have ever felt. The echo in my skull of
the blade scraping across thinly covered bone was bazaar.
I will never forget the look on my husband's face when he looked at
me straight on. It nearly knocked the wind out of him and he quickly
pulled me into a hug to keep me from seeing his tears. It's sort of a
reality check - my wife really does have cancer. It took a few days to
adjust. I realized Shoyei had adapted when he commented a few days
later "Who would of known I'd end up married to a bald old man?"(and
he shunned my bowling ball joke).
For those menopausal women you will appreciate that at the onset of a
hot flash, throwing off one's head covering provides instant relief!
There was a second major event last week. My chemo oncology doctor
quit. He literally showed up last Wednesday and announced it was his
last day! He had a great opportunity to start an oncology facility in
Show Low.his patients never heard a word from him.
Somewhat shocking for all involved. He left the remaining doctors in
the practice scrambling to pick up the multiple balls he dropped,
slotting us into their already full schedules. I am blessed to have
landed in the hands of a better doctor(by reputation) whom I already love,
Dr Kato is 1/2 Japanese(likeShoyei) and his other half is Cuban. He is
sweet and gentle and confident. My first visit to him yielded really good
news. The lymph nodes, which this chemo is intended to shrink prior to
my surgery, have already shrunk! He felt nothing!
I rest in the arms of my Savior.
muster. My readings and the comments of friends and doctors had
prepared me for the worst. So I laid around for a few days following,
waiting for whatever was going to hit me before I realized I was off
the hook again.
Considering the possibilities, it hardly seems worth mentioning but
within a few days of treatment my hair had thinned to the point it was
time to shave my head. My husband approached this with the solemnity
he felt the occasion required. I had hoped for some levity. Not facing
a mirror, I felt every pass of his electric razor convinced he was
missing spots and fighting the urge to grab it from his hands and do
it myself. When he was finished I took a look. He hadn't missed a
hair. I stared at the image in my mirror with shock at the naked head
staring back. I felt exposed, truly naked and like Eve I wanted to run
from the humiliation of it. My wig, hats and scarves felt horrible
against the short nap of hair remaining so we went back at it with
shaving cream and a razor blade. Now that, without a doubt, is the
strangest physical sensation I have ever felt. The echo in my skull of
the blade scraping across thinly covered bone was bazaar.
I will never forget the look on my husband's face when he looked at
me straight on. It nearly knocked the wind out of him and he quickly
pulled me into a hug to keep me from seeing his tears. It's sort of a
reality check - my wife really does have cancer. It took a few days to
adjust. I realized Shoyei had adapted when he commented a few days
later "Who would of known I'd end up married to a bald old man?"(and
he shunned my bowling ball joke).
For those menopausal women you will appreciate that at the onset of a
hot flash, throwing off one's head covering provides instant relief!
There was a second major event last week. My chemo oncology doctor
quit. He literally showed up last Wednesday and announced it was his
last day! He had a great opportunity to start an oncology facility in
Show Low.his patients never heard a word from him.
Somewhat shocking for all involved. He left the remaining doctors in
the practice scrambling to pick up the multiple balls he dropped,
slotting us into their already full schedules. I am blessed to have
landed in the hands of a better doctor(by reputation) whom I already love,
Dr Kato is 1/2 Japanese(likeShoyei) and his other half is Cuban. He is
sweet and gentle and confident. My first visit to him yielded really good
news. The lymph nodes, which this chemo is intended to shrink prior to
my surgery, have already shrunk! He felt nothing!
I rest in the arms of my Savior.
August 28th 2008, Day 2 Chemo, Part 2
I have an aversion to boredom. Seems to me life is full of reasons
to never be bored. Its one of the things that attracted me to my
husband. I knew I would never be bored - he still fascinates me.
Perhaps that's why I see my cancer as a curious journey. Not one I
would have signed up for but hey, here I am. Might as well sit back
and enjoy the ride.
So here I sit - IV dripping its tiny cell warriors into my veins
equipped with a powerful arsenal to do battle against the enemy
cancer cells. It fascinates me that they know how to target
different body parts with this stuff. 6 other women share this room
today - each in varying stages of their battle. There's implied
comaraderie here. I'm grateful for the upbeat jazz playing and that
it still makes me want to get up and dance.
I'm slipping into the routine of this process. It is my new norm and
not nearly so threatening as last time. The scariness is gone.
No imagined numbness or other side effects. But it is a bit like
standing at the bottom of a mountain and knowing I must scale to the
top. I feel well-prepared unlike my first backpack trip into the
Sierras when my pack weighed 55lbs(I weighed 115), I wore a pair of
Keds and my sister and I had brought our two 3 month old puppies!
Now that was a toughie!
My husband is sitting quietly behind me - my sentinel. He's not
supposed to be here. No family after the first infusion. He's not
deterred but he is quiet as a churchmouse hoping to be excused for
breaking the rules for love. I excuse him. I adore him for his
commitment to see me through every part of this.
Over - the drip has stopped. A non-event really. Thank You Lord!
Now the wait for the symptoms. The anticipation that something is
coming I do not yet understand. But I am not alone. And it will be
interesting.
to never be bored. Its one of the things that attracted me to my
husband. I knew I would never be bored - he still fascinates me.
Perhaps that's why I see my cancer as a curious journey. Not one I
would have signed up for but hey, here I am. Might as well sit back
and enjoy the ride.
So here I sit - IV dripping its tiny cell warriors into my veins
equipped with a powerful arsenal to do battle against the enemy
cancer cells. It fascinates me that they know how to target
different body parts with this stuff. 6 other women share this room
today - each in varying stages of their battle. There's implied
comaraderie here. I'm grateful for the upbeat jazz playing and that
it still makes me want to get up and dance.
I'm slipping into the routine of this process. It is my new norm and
not nearly so threatening as last time. The scariness is gone.
No imagined numbness or other side effects. But it is a bit like
standing at the bottom of a mountain and knowing I must scale to the
top. I feel well-prepared unlike my first backpack trip into the
Sierras when my pack weighed 55lbs(I weighed 115), I wore a pair of
Keds and my sister and I had brought our two 3 month old puppies!
Now that was a toughie!
My husband is sitting quietly behind me - my sentinel. He's not
supposed to be here. No family after the first infusion. He's not
deterred but he is quiet as a churchmouse hoping to be excused for
breaking the rules for love. I excuse him. I adore him for his
commitment to see me through every part of this.
Over - the drip has stopped. A non-event really. Thank You Lord!
Now the wait for the symptoms. The anticipation that something is
coming I do not yet understand. But I am not alone. And it will be
interesting.
August 28th 2008, 2nd Day of Chemo
Today I face the second round of chemo. 2nd of 8. I awake to my cup of coffee(I haven't given it up yet) and my appointment with God. "Thank you Lord for this two week reprieve from any symptoms." I am truly grateful forthis. Yet I know they will come in some form. I've been warned this second dose can knock you off your feet and I pray again that this cup will pass."Neverthless thy will be done."What will you show me today Lord? Reveal Your ways to me." I open my devotional, August 28th "there He tested them"...Exodus
15:25. I laugh, amused at the aptness of the passage. Last night I ran my hands through my hair and came away with fistfulls. It's begun. I'm a little surprised at my resignaion to this - I'm actually happy because I know it means the chemo is doing it's thing - preventing the division of my cancer cells. Temporary baldness seems a small price to pay. My husband is not so happy. He gets angry when I tease him about my intention of drawing bowling ball holes on my head. I lay off. The baldness is the first visible sign that I am sick. I have a lot of hair so the fallout is not obvious today.
15:25. I laugh, amused at the aptness of the passage. Last night I ran my hands through my hair and came away with fistfulls. It's begun. I'm a little surprised at my resignaion to this - I'm actually happy because I know it means the chemo is doing it's thing - preventing the division of my cancer cells. Temporary baldness seems a small price to pay. My husband is not so happy. He gets angry when I tease him about my intention of drawing bowling ball holes on my head. I lay off. The baldness is the first visible sign that I am sick. I have a lot of hair so the fallout is not obvious today.
Tuesday, January 27, 2009
August 19th 2008, Grace
My dear friend Sheila once expressed in our prayer time the wonder and sufficiency of God's grace for believers in the midst of storms. I can attest to that fact and hope that measure of grace for you though I cannot hope for the trial to take you there.
One of the great things about the big hurts and trials in life, is the quick and sweet response of those who love us. Each one ministers in a unique way.
This is one. This video clip was sent to me by a dear young friend of my children. It ministered hope and faith anew to my soul and I pray it will do the same for you.
"By His tripes we are healed".
God Bless!
http://www.youtube.com/
watch?v=x4xsWldmqAo
One of the great things about the big hurts and trials in life, is the quick and sweet response of those who love us. Each one ministers in a unique way.
This is one. This video clip was sent to me by a dear young friend of my children. It ministered hope and faith anew to my soul and I pray it will do the same for you.
"By His tripes we are healed".
God Bless!
http://www.youtube.com/
watch?v=x4xsWldmqAo
August 16th 2008, Praising God
"I will bless the Lord at all times;
His praise shall continually be in my mouth.
My soul will make its boast in the Lord;
The humble will hear it and rejoice.
O magnify the Lord with me,
And let us exalt His name together.
I sought the Lord and He answered me,
And delivered me from all my fears." Psalm 34:1-4
I am amazed that all my fear is gone. I sought the Lord and He answered me. Simple as that.
His praise shall continually be in my mouth.
My soul will make its boast in the Lord;
The humble will hear it and rejoice.
O magnify the Lord with me,
And let us exalt His name together.
I sought the Lord and He answered me,
And delivered me from all my fears." Psalm 34:1-4
I am amazed that all my fear is gone. I sought the Lord and He answered me. Simple as that.
August 14th 2008, First Day of Chemo
Moments before chemo.Carrie and Peter surprised me. We walked into the restaurant and there they were. Shoyei pulled the surprise off completely. So sweet!
I'm sitting in my lounge chair listening to "Smooth Jazz", a very relaxing atmosphere considering all things. I'm hooked up to an IV receiving something to prevent nausea from the cocktail to come whose ingredients I'm looking at. There is a bag of clear stuff and a giant syringe of something resembling cranberry juice. H'ors d'uerve choices abound to accompany libations(cheese and crackers, peanuts.)It's a real nice place.
Shoyei was a bit nervous as we approached but my "let's get on with it attitude" did not acknowledge this slight falter. My wonderful husband. One of the evident gifts of this trial. A loyal companion for the journey. I lean on his arm as he scans the horizon prepared to defend any foe. "I look to the hills where does my help come from".
Streams in the Desert today left me bubbling over with joy again. God is my ever present help. John 19:11 "you would have no power over me if not given you from above".
The clear liquid is coursing through my veins now seeking out the cancer cells. I don't feel any different. Yet.
Tina Turner is belting out a song "What's love got to do with it?" My toes are tapping out the rhythm as I answer her silently - "everything!"
A minor glitch. My vision is blurry, I'm dizzy and my tongue is numb. I think. The IV is stopped to watch me.
20 minutes go by. We try again without incident. Numb tongue? Man my imagination is out of control.
20 minutes go by. All OK. Time for the red stuff. I must now suck on a popsicle to shrink blood vessels and ward off mouth sores. Too graphic? Sorry.
I'm sitting in my lounge chair listening to "Smooth Jazz", a very relaxing atmosphere considering all things. I'm hooked up to an IV receiving something to prevent nausea from the cocktail to come whose ingredients I'm looking at. There is a bag of clear stuff and a giant syringe of something resembling cranberry juice. H'ors d'uerve choices abound to accompany libations(cheese and crackers, peanuts.)It's a real nice place.
Shoyei was a bit nervous as we approached but my "let's get on with it attitude" did not acknowledge this slight falter. My wonderful husband. One of the evident gifts of this trial. A loyal companion for the journey. I lean on his arm as he scans the horizon prepared to defend any foe. "I look to the hills where does my help come from".
Streams in the Desert today left me bubbling over with joy again. God is my ever present help. John 19:11 "you would have no power over me if not given you from above".
The clear liquid is coursing through my veins now seeking out the cancer cells. I don't feel any different. Yet.
Tina Turner is belting out a song "What's love got to do with it?" My toes are tapping out the rhythm as I answer her silently - "everything!"
A minor glitch. My vision is blurry, I'm dizzy and my tongue is numb. I think. The IV is stopped to watch me.
20 minutes go by. We try again without incident. Numb tongue? Man my imagination is out of control.
20 minutes go by. All OK. Time for the red stuff. I must now suck on a popsicle to shrink blood vessels and ward off mouth sores. Too graphic? Sorry.
July 7th 2008, Day 1 Cancer
I march resignedly into the examination room ahead of my husband and anxious for an end to the suspense. I expect the worst. Waiting for the biopsy results has been it's own journey.
"How was the drive down?" Dr. Corn asked, blond curls bouncing irreverently, her blue eyes targeting mine. A contradiction of impertinence and compassion which I interpret to mean the news is not good.
I shake my head and waive my hand deflecting her nicety. My fate hangs between us like an unclaimed short straw. "Just tell me the news," I answer a bit rudely.
"Oh," she says, "you have breast cancer, honey" delivered in a tone suggesting this can't be a surprise. Her small feminine hand, a breast surgeon's hand, rests on my shoulder assuming an intimacy we will soon have. Its always struck me as suspicious being called "honey" by someone younger than me. I'm not sure I trust her.
Breast cancer. The words bounce around my mind like a steel ball in a pinball machine, bumping against the many scenarios I'd conjured up in anticipation of this moment. Cancer. Ping. Chemo. Ping ping.
I look at my husband. Stricken. Apparently my captain has come unprepared. Had he missed the clouds forming on the horizon? My heart cries out to him: "Too far south! We've sailed too far south. We have no choice now! We'll have to sail through this one and hope for safe harbor beyond."
His hand nervously rubs my neck vigorously,annoyingly, wanting to DO something, I can't focus. The blood rushing in my ears is making it hard to hear.
She's answering questions with a practiced voice of gentle concern, experienced in the art of delivering bad news. Do they teach that I wonder? Bedside manners 101? She deserves a gold star. The Emily Post award for physician manners.
Cancer! She's talking. There it is again. I'm not paying attention and there are so many questions.
"Can you write it all down for me?" I say. "I'm not getting all this." "Sue will write it down for you" she gestures to the girl at the desk of this two woman office. My doctor appears too young, unable to deal with the reality of her chosen vocation. The words from the Sound of Music come to me - how do you solve a problem like Maria(Christa) how do you catch a wave and pin it down? She's excited with the anticipation of her impending trip to Europe. She assures me the resulting delay of surgery will make no difference. At once I am thankful for the delay and curious - if cancer is roaming my body searching for a place to land, does a e week delay gove it the advantage? Subvert squatting rights so to speak? But hey, my doctor deserves her vacation.
My husband chats with Sue who is busy scheduling appointments for a plastic surgeon, radiologist and chemo doctor. I'm on my cell phone delivering the 'news' to my daughter, my son, my mother,sister and my co-workers with careful words of hope for the ones not ready to give me up. I call my brother last. He's been through this five times! Some unusual free floating malignant tumors in his abdominal cavity. I remember thinking God was trying to get his attention. And He did. Finally. It was somewhere between his 4th and 5th surgery. His response reveals his experience in tired resignation. He is SO sorry I have to go through this. A shivver of fear ripples my soul.
"How was the drive down?" Dr. Corn asked, blond curls bouncing irreverently, her blue eyes targeting mine. A contradiction of impertinence and compassion which I interpret to mean the news is not good.
I shake my head and waive my hand deflecting her nicety. My fate hangs between us like an unclaimed short straw. "Just tell me the news," I answer a bit rudely.
"Oh," she says, "you have breast cancer, honey" delivered in a tone suggesting this can't be a surprise. Her small feminine hand, a breast surgeon's hand, rests on my shoulder assuming an intimacy we will soon have. Its always struck me as suspicious being called "honey" by someone younger than me. I'm not sure I trust her.
Breast cancer. The words bounce around my mind like a steel ball in a pinball machine, bumping against the many scenarios I'd conjured up in anticipation of this moment. Cancer. Ping. Chemo. Ping ping.
I look at my husband. Stricken. Apparently my captain has come unprepared. Had he missed the clouds forming on the horizon? My heart cries out to him: "Too far south! We've sailed too far south. We have no choice now! We'll have to sail through this one and hope for safe harbor beyond."
His hand nervously rubs my neck vigorously,annoyingly, wanting to DO something, I can't focus. The blood rushing in my ears is making it hard to hear.
She's answering questions with a practiced voice of gentle concern, experienced in the art of delivering bad news. Do they teach that I wonder? Bedside manners 101? She deserves a gold star. The Emily Post award for physician manners.
Cancer! She's talking. There it is again. I'm not paying attention and there are so many questions.
"Can you write it all down for me?" I say. "I'm not getting all this." "Sue will write it down for you" she gestures to the girl at the desk of this two woman office. My doctor appears too young, unable to deal with the reality of her chosen vocation. The words from the Sound of Music come to me - how do you solve a problem like Maria(Christa) how do you catch a wave and pin it down? She's excited with the anticipation of her impending trip to Europe. She assures me the resulting delay of surgery will make no difference. At once I am thankful for the delay and curious - if cancer is roaming my body searching for a place to land, does a e week delay gove it the advantage? Subvert squatting rights so to speak? But hey, my doctor deserves her vacation.
My husband chats with Sue who is busy scheduling appointments for a plastic surgeon, radiologist and chemo doctor. I'm on my cell phone delivering the 'news' to my daughter, my son, my mother,sister and my co-workers with careful words of hope for the ones not ready to give me up. I call my brother last. He's been through this five times! Some unusual free floating malignant tumors in his abdominal cavity. I remember thinking God was trying to get his attention. And He did. Finally. It was somewhere between his 4th and 5th surgery. His response reveals his experience in tired resignation. He is SO sorry I have to go through this. A shivver of fear ripples my soul.
Subscribe to:
Posts (Atom)