April 20, 2009, Beginning the End
Monday.I walk back into the oncology waiting room beaming at my husband. "I'm done!" After 10 months, it seems somehow strange to have reached the end of treatment. This long hard journey has come to an end. How different the world looks on this side of the mountain. No doubt I will spend the next 10 months recalling the ups and downs of this path, what I have learned about life, what I have learned about God.
The skin across my chest is bright red and feels sore and tight like the Jamaican sunburn I was promised. We had a lovely week-end, staying once again at a friend's home where our daughter and son-in-law joined us. It was a great time to begin to put this year behind us and look to the future and the myriad of wonderful possibilities of life.
Last Thursday.
I see Dr. Kato for blood work and find out the next step - which little daily pill I will spend the next five years on. He prescribes Femara, an 'aromatase inhibitor' used to prevent the absorption of estrogen by cancer cells. He gives me a one month supply, $300 worth. He has seemed overworked and distracted the last few visits. He says my blood work is perfect and dismissively tells me to come back in a month. I don't leave so easily. I have a question. I ask if he recommends anything to deal with the bone loss caused by Femara such as an infusion like Boniva(the one Sally Fields advertises). He nods his head and says "Yes, that's a good idea." When I see him next month he'll give me Zometa by IV.
"Sure glad I came up with that idea," I say to Shoyei as we drive away. I've heard I have to be my "own advocate" but my own doctor too? It depresses me to lose confidence in Dr. Kato. On the way home I wonder aloud why he hasn't recommended a bone density test before I get started. I determine to find out tomorrow.
Friday
I call Dr. Kato's office. "I was just wondering if Dr. Kato thinks I should have a bone density test before I start on the Femara?" I ask his receptionist. She checks and calls me back, he said: Yes, I should have a bone density test, he'll have someone call me to schedule it. Wow! I'm full of good ideas and I barely got Cs in science! I am feeling very unprotected by my doctor.
Later that day I see Dr. Kuske for my last weekly check-up to see how I am faring with the burn and fatigue and all. My husband joins us. Dr. Kuske spends our entire visit on his Blackberry. He says he's waiting for a call from a doctor but then gets a text from a different doctor. Dr. Kato is "asking whether I can see a patient at 6:15! On Friday night! We have theater tickets!" he states in mock outrage. We nod our heads in sympathy at this unrealistic request. I glance at my husband's bemused expression watching the doctor as his thumbs fly over the keyboard in response. He absently asks how my skin is doing and as I answer he is staring at his vibrating PDA and reading another message. "Oh good. It can wait til Monday." He holds up the screen waiving it for my husband and me to read like show and tell in front of a class of grade school children. He then returns to his texting and, with eyes on his thumb work, tells me what I can expect as far as my skin healing. We leave feeling udderly neglected, pun intended. Totally let down by the experts.
We take the week-end to get over it and don't even speak of it until the next night when our collective shock is wearing off and the retelling of it solidifies our right to be outraged. Our mission is clear. We will become expert advocates. I wonder sadly about those who are too ill or too frail to be advocates for themselves.
So it is over. The biopsy- the port implant- the chemo - the burned hands - the mastectomy - more chemo - Neulasta - bone pain -expander rejection - port removal and radiation. It is all over. The calls of concern, the prayers for healing, the doting care of my husband, the meals, the cards, the flowers and gifts, the host of new friends - these are over too but they are the vestiges of cancer I will cherish. That is why, when asked about my journey, I get a wistful smile and think on how loved and cared for I have felt by my wealth of friends and family. I am glad I walked this path. Even when I was alone, I was never "alone". Even when it was hard, it was never more than I could bear for others bore it with me.
Now I face the trial of not fixating on every ache and pain and wondering if it's back. Yet I know that even if it comes back, it will be less frightening. So many women have touched my life over these many weeks. It's amazing what two women can share in ten minutes. We exchange emails, each of us a bit desperate for more time to share, making ten-minute friends as we sit knee to knee, braless and gowned. The last new friend I make is Gerri, a beautiful woman with clear blue eyes and thick white hair which she wears in a graceful pageboy. She is on her second bout of breast cancer. Her sweetness and peace inspire me. We speak fast and excitedly sharing our lives, knowing the time is brief between patients. We share our love for Jesus and rejoice for each other. We squeeze hands and hug as if we've known each other all our lives. It's a fitting end to my experience and I leave the same way I entered, smiling, with joy in my heart, with peace in my soul. A new beginning.
Tuesday, April 21, 2009
Friday, April 17, 2009
April 9, 2009 Only My Hairdresser knows
My hair is white. My post chemotherapy hair is white like snow. It is two inches long, soft and curly. I am shocked by its absolute whiteness, like the woolly head of God I think. It looks like I sudsed up a lather of shampoo and piled it on top of my head, a kid in a tub. I wonder how it would look grown to my preferred length. Should I leave it white?
A few years ago a friend of mine showed up with a great new haircut. When pressed, she admitted it was a wig. "No way," I said. "I want one!" She went with me to try on wigs. One looked too young. The other too old, the other too floozyish. I'd almost given up hope until I tried the "right" one. It was great! On the occasional bad hair day or vacationing at the beach, my wig was the perfect answer. I liked it so much I took it to my hairdresser to copy so eventually you couldn't tell whether I was wearing a wig or not. When chemo finally took my hair, I was ready and my public none-the-wiser.
There is a vast difference between wearing a wig to cover a bad hair day and wearing one to cover up baldness or strangely colored regrowth. The first being optional. Wig-wearing soon grows old and I like nothing better than arriving home at the end of the day and tossing my wig on the bed. My husband says he doesn't mind but sometimes I leave it on through dinner to let him see me as his old PRE-cancer girl.
He makes jokes but I can't help but wonder what it's really like for him to have this little flat mangle-chested woman running around imposing as his wife. He must miss the old girl. I do.
"I'm too young for white hair," I tell my daughter. "You're 58!" She replies as if to say "who-are-you-kidding"? I remember her favorite nursery poem by the slightly deranged Lewis Carrol:
You are old Father William, I said to the man, and have grown most incredibly fat. Yet you did a back somersault in at the door. Tell me what was the meaning of that?
I don't feel like a senior citizen quite yet. That clinches it! Redken, here I come.
My hair is white. My post chemotherapy hair is white like snow. It is two inches long, soft and curly. I am shocked by its absolute whiteness, like the woolly head of God I think. It looks like I sudsed up a lather of shampoo and piled it on top of my head, a kid in a tub. I wonder how it would look grown to my preferred length. Should I leave it white?
A few years ago a friend of mine showed up with a great new haircut. When pressed, she admitted it was a wig. "No way," I said. "I want one!" She went with me to try on wigs. One looked too young. The other too old, the other too floozyish. I'd almost given up hope until I tried the "right" one. It was great! On the occasional bad hair day or vacationing at the beach, my wig was the perfect answer. I liked it so much I took it to my hairdresser to copy so eventually you couldn't tell whether I was wearing a wig or not. When chemo finally took my hair, I was ready and my public none-the-wiser.
There is a vast difference between wearing a wig to cover a bad hair day and wearing one to cover up baldness or strangely colored regrowth. The first being optional. Wig-wearing soon grows old and I like nothing better than arriving home at the end of the day and tossing my wig on the bed. My husband says he doesn't mind but sometimes I leave it on through dinner to let him see me as his old PRE-cancer girl.
He makes jokes but I can't help but wonder what it's really like for him to have this little flat mangle-chested woman running around imposing as his wife. He must miss the old girl. I do.
"I'm too young for white hair," I tell my daughter. "You're 58!" She replies as if to say "who-are-you-kidding"? I remember her favorite nursery poem by the slightly deranged Lewis Carrol:
You are old Father William, I said to the man, and have grown most incredibly fat. Yet you did a back somersault in at the door. Tell me what was the meaning of that?
I don't feel like a senior citizen quite yet. That clinches it! Redken, here I come.
Tuesday, April 14, 2009
April 7, 2009 Today I let myself down.
We left Prescott as usual, early enough to avoid traffic, grab a bite to eat and arrive early for my 6:15 radiation therapy appointment. We never want to be late and mess up every one's schedule.
When I walked into the waiting room there was a rather frazzled looking woman sitting there alone. I'd seen 5:45 Carol go in so I walked on back and changed into a gown and sat down to wait. On time for a change I think to myself. The woman from the waiting room shows up and changes into a gown. "Hi!" I say flashing my friendly grin. "Are you new?" "I'm usually here in the daytime," she states jerking her head at me and acting very annoyed. She opens a book and resumes marking the pages with her red pen. "What time is your appointment?" I try again. But she dismisses me with a flick of her wrist in my direction, mumbling something about needing to see the doctor "and everything".
6:00 April shows up with her usual smile, gets changed and sits down with me. We catch up a bit. Carol returns complaining she feels like a crispy critter so we discuss skin regimens. No-appointment 'Sally' shakes her long red wig and turns her body away from us, obviously annoyed by all this friendly chatter. We three queens roll our eyes at each other as if to say "who is she?" Carol leaves and April is called in.
A few minutes later, my miserable roommate catches the attention of a technician and asks how much longer. "I've got children at home," she adds. I picture a couple of grade schoolers fending for themselves eating sugared cereal for dinner. "I'll check," the techie says and returns moments later. "10 minutes," she says.
I begin to seethe. It appears I am being bumped by Miss don't-talk-to-me-you-bother-me. It's not right, I say to myself. The 6:15-right-after-April is my time slot. We left home at 2:45 just to be here with room to spare so I don't hold anyone up! She takes a call from her child and makes sure she's doing her Physics homework. Not grade schoolers, I surmise.
I happen to know 6:30 Toby is through with her treatment. Let her have that spot. Right AFTER ME, I think. But no, April returns and "Adrienne" is called. "You're not treating me next," ask? No, says the technician. Adrienne is next. Walking from the room Adrienne spins her head back at me looking not unlike Linda Blair in the Exorcist. "I've waited 2 hours" she spits. "And I have a two hour drive home," I say to her but she's around the corner and I'm left to fume at the unfairness of it all.
I storm out into the waiting room to complain to my husband explaining how this woman, who has missed her morning appointment, has just squeezed me out. He patiently rubs my arm smoothing my rumpled feathers. I'm spewing on about the scheduling in this joint and all the waiting I've done and how dare they give her my time just because she missed her time. Then I add in all honesty, I wouldn't be feeling like this if she hadn't been so cold and rude to me. I haven't yet admitted that I'm behaving in a horribly UNgracious manner, shamefully inflexible and inexcusably witchy.
When it's my turn, there is no apology for keeping ME waiting. I plan to give them the cold shoulder which is actually literal in this meat locker temperature of a treatment room. But I don't last. I make an effort to be friendly.
WHAT ABOUT ME? WHAT ABOUT ME? At once, I'm disgusted and disappointed in my own behavior. What about you Kathleen? God forgive me. What an ungracious shrew I've been. I am so sorry I tell Him. How can I pass the big test of accepting the burden of cancer and fail this little one? You've never liked people who butt in line, I rationalize. Maybe it's my chemo brain fog, I justify. Or maybe it's my sin nature. Please forgive me, I attempt to telepathically say to Adrienne. Perhaps she is a single Mom under tremendous pressure to work, raise her children and deal with cancer.
Thank You, Lord, for forgiveness. Thank You for a fresh chance to do better next time.
We left Prescott as usual, early enough to avoid traffic, grab a bite to eat and arrive early for my 6:15 radiation therapy appointment. We never want to be late and mess up every one's schedule.
When I walked into the waiting room there was a rather frazzled looking woman sitting there alone. I'd seen 5:45 Carol go in so I walked on back and changed into a gown and sat down to wait. On time for a change I think to myself. The woman from the waiting room shows up and changes into a gown. "Hi!" I say flashing my friendly grin. "Are you new?" "I'm usually here in the daytime," she states jerking her head at me and acting very annoyed. She opens a book and resumes marking the pages with her red pen. "What time is your appointment?" I try again. But she dismisses me with a flick of her wrist in my direction, mumbling something about needing to see the doctor "and everything".
6:00 April shows up with her usual smile, gets changed and sits down with me. We catch up a bit. Carol returns complaining she feels like a crispy critter so we discuss skin regimens. No-appointment 'Sally' shakes her long red wig and turns her body away from us, obviously annoyed by all this friendly chatter. We three queens roll our eyes at each other as if to say "who is she?" Carol leaves and April is called in.
A few minutes later, my miserable roommate catches the attention of a technician and asks how much longer. "I've got children at home," she adds. I picture a couple of grade schoolers fending for themselves eating sugared cereal for dinner. "I'll check," the techie says and returns moments later. "10 minutes," she says.
I begin to seethe. It appears I am being bumped by Miss don't-talk-to-me-you-bother-me. It's not right, I say to myself. The 6:15-right-after-April is my time slot. We left home at 2:45 just to be here with room to spare so I don't hold anyone up! She takes a call from her child and makes sure she's doing her Physics homework. Not grade schoolers, I surmise.
I happen to know 6:30 Toby is through with her treatment. Let her have that spot. Right AFTER ME, I think. But no, April returns and "Adrienne" is called. "You're not treating me next," ask? No, says the technician. Adrienne is next. Walking from the room Adrienne spins her head back at me looking not unlike Linda Blair in the Exorcist. "I've waited 2 hours" she spits. "And I have a two hour drive home," I say to her but she's around the corner and I'm left to fume at the unfairness of it all.
I storm out into the waiting room to complain to my husband explaining how this woman, who has missed her morning appointment, has just squeezed me out. He patiently rubs my arm smoothing my rumpled feathers. I'm spewing on about the scheduling in this joint and all the waiting I've done and how dare they give her my time just because she missed her time. Then I add in all honesty, I wouldn't be feeling like this if she hadn't been so cold and rude to me. I haven't yet admitted that I'm behaving in a horribly UNgracious manner, shamefully inflexible and inexcusably witchy.
When it's my turn, there is no apology for keeping ME waiting. I plan to give them the cold shoulder which is actually literal in this meat locker temperature of a treatment room. But I don't last. I make an effort to be friendly.
WHAT ABOUT ME? WHAT ABOUT ME? At once, I'm disgusted and disappointed in my own behavior. What about you Kathleen? God forgive me. What an ungracious shrew I've been. I am so sorry I tell Him. How can I pass the big test of accepting the burden of cancer and fail this little one? You've never liked people who butt in line, I rationalize. Maybe it's my chemo brain fog, I justify. Or maybe it's my sin nature. Please forgive me, I attempt to telepathically say to Adrienne. Perhaps she is a single Mom under tremendous pressure to work, raise her children and deal with cancer.
Thank You, Lord, for forgiveness. Thank You for a fresh chance to do better next time.
April 2, 2009 A Great Day
I am sitting on the back patio of a Sun City West home listening to a symphony of birds - quail, humming birds, doves, starlings - filling the branches of lush trees. The fragrance of orange trees fills the air. This is a senior community. I've never believed in the concept of the separation of age groups in such a permanent way. The idea of no children in the community depresses me. The seniors, I believe, need young people and the young people need seniors. The thought that the sound-of-the-city is ambulance sirens and oxygen-delivery trucks seems too horrible to contemplate. I would not however, I admit to myself, miss the boom boom of rap blaring from young people's cars, keeping beat to their raging hormones.
I'm surprised to hear a rowdy gathering a few patios away in this fenceless community. These older boys are laughing up a storm and they are actually listening to band music! I've never known anyone who listened to band music. I recognize the John Philip Souza piece I played for my son's first grade class. I was a volunteer art docent and even wore a borrowed band uniform to help illustrate the American parade painting I'd brought to share and inspire the boys and girls. We marched around the room with imaginary batons and instruments. Perhaps these are old friends sharing memories of high school band-playing days. I wonder if they're marching around their patio. The foliage is thick enough to conceal them.
The weather is glorious! It's not yet warm enough to drive everyone in to their air conditioned houses. A friend has given us the use of this beautiful home while I finish up the last half of my radiation. It is wonderful to have a place to rest, occasionally sparing us the daily 220 mile round trip drive. It is the first time since last summer I've felt this relaxed. Is there anything more wonderful than spending a day outdoors in perfect weather? There is even a gentle breeze stirring the trees.
This morning we drove for an hour trying to find a place for breakfast, shunning the long line at IHop. We finally found a golf course restaurant with a big "Breakfast served all day" banner stating "open to the public". Knowing golf course restaurants serve good fare at cheap prices, my husband pulled in at the insistence of our growling stomachs. We dined on yummy biscuits and gravy and bad coffee, and were grateful for both. There was a time when I would have insisted we drive farther and try to find the perfect little cafe but I've mellowed. It's a lot less stressful to go with the flow. Watching golfers come and go, we found ourselves dreaming of the day we'll be able to step back onto a golf course together. But either I wait for my new breasts or learn an new swing to fit my temporary body. My prosthetics breasts aren't exactly stationary. Besides, the muscle connecting my right chest to my arm isn't up to the contortions a back swing requires. We don't mention the added constraints our budget imposes. It's nice to dream. Last night's treatment was hard. There was a new tech and she wasn't able to position me as she needed to. My right arm fits in a two piece arm rest over my head. It was angled in a way that caused extreme discomfort and seemed to me to be different than usual. Now, I think to myself, I understand the torture of being drawn and quartered. My fifteen minute treatment went forty-five minutes and still failed to get the two xrays they wanted. She is sweet but I was frustrated and let my claustrophobia get to me when she abandoned me in the closed room way longer than I'm used to.
"Hello!" I call. "Anyone there?" "Helloooo! Allison!!!!" I sit up and discover I am four feet off the ground. I'd never realized the table I lay on lifted so high. This explains the smaller technicians straining to replace the tailored "lens" equipment and peering over the table to verify my tattoo points. By now, I am acutely aware of the other moves of this massive Varian Linear Accelerator specific to my treatment. I'm familiar with the beeping and whirring and buzzing sounds and red and green lights. How could I be unaware of my elevated state? I lay back and picture my sheet draped bed lifted by the telepathic thoughts of a magician. Chemo fog hasn't fully lifted, I conclude.
Turns out the technician was off getting advice on my case from the on-call doctor mysteriously squirreled away somewhere in this building. When she re enters she tells me we will give up trying for xrays tonight and hope my muscle relaxes for the next session. Apparently, it's not uncommon for muscles to tighten up from the radiation. She gave me some stretching exercises and I give some serious thought to skipping the next treatment.
I've decided what I am overhearing is a boisterous card party - a friendly game, I decide, with a wife supplying snacks and encouragement. I'm a hopeless eaves dropper. The sun lulls me to slumber. When, I wonder, is the last time I spent an entire afternoon outdoors in such a peaceful setting? What a great day! God is on His throne and all is right with the world.
I am sitting on the back patio of a Sun City West home listening to a symphony of birds - quail, humming birds, doves, starlings - filling the branches of lush trees. The fragrance of orange trees fills the air. This is a senior community. I've never believed in the concept of the separation of age groups in such a permanent way. The idea of no children in the community depresses me. The seniors, I believe, need young people and the young people need seniors. The thought that the sound-of-the-city is ambulance sirens and oxygen-delivery trucks seems too horrible to contemplate. I would not however, I admit to myself, miss the boom boom of rap blaring from young people's cars, keeping beat to their raging hormones.
I'm surprised to hear a rowdy gathering a few patios away in this fenceless community. These older boys are laughing up a storm and they are actually listening to band music! I've never known anyone who listened to band music. I recognize the John Philip Souza piece I played for my son's first grade class. I was a volunteer art docent and even wore a borrowed band uniform to help illustrate the American parade painting I'd brought to share and inspire the boys and girls. We marched around the room with imaginary batons and instruments. Perhaps these are old friends sharing memories of high school band-playing days. I wonder if they're marching around their patio. The foliage is thick enough to conceal them.
The weather is glorious! It's not yet warm enough to drive everyone in to their air conditioned houses. A friend has given us the use of this beautiful home while I finish up the last half of my radiation. It is wonderful to have a place to rest, occasionally sparing us the daily 220 mile round trip drive. It is the first time since last summer I've felt this relaxed. Is there anything more wonderful than spending a day outdoors in perfect weather? There is even a gentle breeze stirring the trees.
This morning we drove for an hour trying to find a place for breakfast, shunning the long line at IHop. We finally found a golf course restaurant with a big "Breakfast served all day" banner stating "open to the public". Knowing golf course restaurants serve good fare at cheap prices, my husband pulled in at the insistence of our growling stomachs. We dined on yummy biscuits and gravy and bad coffee, and were grateful for both. There was a time when I would have insisted we drive farther and try to find the perfect little cafe but I've mellowed. It's a lot less stressful to go with the flow. Watching golfers come and go, we found ourselves dreaming of the day we'll be able to step back onto a golf course together. But either I wait for my new breasts or learn an new swing to fit my temporary body. My prosthetics breasts aren't exactly stationary. Besides, the muscle connecting my right chest to my arm isn't up to the contortions a back swing requires. We don't mention the added constraints our budget imposes. It's nice to dream. Last night's treatment was hard. There was a new tech and she wasn't able to position me as she needed to. My right arm fits in a two piece arm rest over my head. It was angled in a way that caused extreme discomfort and seemed to me to be different than usual. Now, I think to myself, I understand the torture of being drawn and quartered. My fifteen minute treatment went forty-five minutes and still failed to get the two xrays they wanted. She is sweet but I was frustrated and let my claustrophobia get to me when she abandoned me in the closed room way longer than I'm used to.
"Hello!" I call. "Anyone there?" "Helloooo! Allison!!!!" I sit up and discover I am four feet off the ground. I'd never realized the table I lay on lifted so high. This explains the smaller technicians straining to replace the tailored "lens" equipment and peering over the table to verify my tattoo points. By now, I am acutely aware of the other moves of this massive Varian Linear Accelerator specific to my treatment. I'm familiar with the beeping and whirring and buzzing sounds and red and green lights. How could I be unaware of my elevated state? I lay back and picture my sheet draped bed lifted by the telepathic thoughts of a magician. Chemo fog hasn't fully lifted, I conclude.
Turns out the technician was off getting advice on my case from the on-call doctor mysteriously squirreled away somewhere in this building. When she re enters she tells me we will give up trying for xrays tonight and hope my muscle relaxes for the next session. Apparently, it's not uncommon for muscles to tighten up from the radiation. She gave me some stretching exercises and I give some serious thought to skipping the next treatment.
I've decided what I am overhearing is a boisterous card party - a friendly game, I decide, with a wife supplying snacks and encouragement. I'm a hopeless eaves dropper. The sun lulls me to slumber. When, I wonder, is the last time I spent an entire afternoon outdoors in such a peaceful setting? What a great day! God is on His throne and all is right with the world.
March 21, 2009 A Band of Sisters
Every evening, five days a week I climb onto a narrow sheet-draped table and subject my right torso to four separate beams of radiation angled just so to attack any remnants of breast cancer lurking in corners. By the third day it becomes old hat.
We arrive at 5:45PM for my 6:15PM appointment. We are very glad for this time slot which allows us to work until 2ish then drive to Phoenix, grab something to eat, get treated and head back.
Every few days they seem to get backed up and I've waited as long as an hour and a half. The back up of back-to-back patients affords me the opportunity to meet a few more patients aka "victims" or "survivors". No one complains about the back-up. We are comforted by our sheer numbers and by the chance to compare pains and burns and skin care remedies.
When I first meet 6 o'clock Margaret she has 3 remaining sessions. Her short blond wig sits slightly askew on her head in need of a good combing. She has strong opinions and a shrill delivery advising all to pursue Tau Chi, read Paul Coelho, ignore any diet restrictions and forgo the follow-up drug regime our doctors want us to do following radiation. She means well. She is a psychiatric nurse and speaks in short clipped statements. Margaret marches in for her turn at radiation before they call for her and returns ordering the next patient, "your turn. I don't wait for them to call me." The sign posted on the wall instructs us to wait until we are called. The ladies smile indulgently. Margaret's replacement, 6 o'clock April is here today - two 6 o'clock patients -no wonder we are late. April's smile is sweet. She seems scared, a nervous what-am-I-doing-here look on her face. She says she's fifty but I clearly see a young girl, striving for courage. 6:45 Toby is 40, with the body of a 20-year old, a big smile, false eye lashes and a cute long blond wig. She's dealing with her cancer, and trying to get back together with an old boyfriend. She's a candidate for the radiation seeds so I'm not quite sure why she's here.
5:45 Michelle is still here. She is the 35-year old mother of a 2 and 5 year old. She's Hers2 positive which I don't fully understand except that I know the miracle drug Herceptin promises great hope for her. She has a year of chemo with this drug beyond the common treatment most of us have had.
7:00 Monique is big, bold and sassy and it's instantly clear she has a heart of gold. 45, bald, in a baseball cap, she share that hers is inflammatory breast cancer, scary because this is the mother-of-all breast cancers, very fast-growing. It is evident that she has taken Toby under her wing as she advises her to forget the boyfriend and concentrate on getting well. She tells me later that her fiance, her faithful Robert who sits in the waiting room with my husband, has an inoperable brain tumor. They are strong together.
A patient returns from the treatment room and changes. She emerges with a question, "anyone here triple negative"? Michelle answers "No, but I have a friend who is. She's doing well". This statuesque 67-year old is just finishing her 3rd round of radiation after 3 rounds of chemo. After she leaves Michelle explains. If you test estrogen, progestrin or Hers2 positive - you're in luck. There are drugs to treat you. Triple negative - nothing works. Now I understand why they told me "you're estrogen and progestrin positive - that's a good thing".
My claim to fame seems to be that I'm the only one among us who elected a bilateral mastectomy. Most have had lumpectomies. I'm not unhappy with my decision.
6:30 Jan is 79. She is trim and spry. Her doctor in Wisconsin sent her here to see the best, Dr. Kuske. She was diagnosed three months after her husband of 60 years died. He, she tells me, was in a wheelchair from polio for 62 years. I do the math. "So you married him when he was already in a wheelchair?" I ask. "I'd knew lots of boys," she says. "He was the special one." It's obvious, so is she. She has been staying in her brother's guest casita. Every morning she gets up, goes into the house, grabs a cup of coffee and climbs into bed with her brother and sister-in-law, who are having their coffee, and they talk. Picturing this makes me smile. Jan is having her last treatment. 6 o'clock Margaret talked her out of the oral chemo follow-up. She says this treatment has taken the stuffing out of her.
I am warmly greeted by at least one of these women every day. I look around and realize I am in good company. I'm glad to be a part of this club I never wanted to join. My husband calls us a band of sisters.
Every evening, five days a week I climb onto a narrow sheet-draped table and subject my right torso to four separate beams of radiation angled just so to attack any remnants of breast cancer lurking in corners. By the third day it becomes old hat.
We arrive at 5:45PM for my 6:15PM appointment. We are very glad for this time slot which allows us to work until 2ish then drive to Phoenix, grab something to eat, get treated and head back.
Every few days they seem to get backed up and I've waited as long as an hour and a half. The back up of back-to-back patients affords me the opportunity to meet a few more patients aka "victims" or "survivors". No one complains about the back-up. We are comforted by our sheer numbers and by the chance to compare pains and burns and skin care remedies.
When I first meet 6 o'clock Margaret she has 3 remaining sessions. Her short blond wig sits slightly askew on her head in need of a good combing. She has strong opinions and a shrill delivery advising all to pursue Tau Chi, read Paul Coelho, ignore any diet restrictions and forgo the follow-up drug regime our doctors want us to do following radiation. She means well. She is a psychiatric nurse and speaks in short clipped statements. Margaret marches in for her turn at radiation before they call for her and returns ordering the next patient, "your turn. I don't wait for them to call me." The sign posted on the wall instructs us to wait until we are called. The ladies smile indulgently. Margaret's replacement, 6 o'clock April is here today - two 6 o'clock patients -no wonder we are late. April's smile is sweet. She seems scared, a nervous what-am-I-doing-here look on her face. She says she's fifty but I clearly see a young girl, striving for courage. 6:45 Toby is 40, with the body of a 20-year old, a big smile, false eye lashes and a cute long blond wig. She's dealing with her cancer, and trying to get back together with an old boyfriend. She's a candidate for the radiation seeds so I'm not quite sure why she's here.
5:45 Michelle is still here. She is the 35-year old mother of a 2 and 5 year old. She's Hers2 positive which I don't fully understand except that I know the miracle drug Herceptin promises great hope for her. She has a year of chemo with this drug beyond the common treatment most of us have had.
7:00 Monique is big, bold and sassy and it's instantly clear she has a heart of gold. 45, bald, in a baseball cap, she share that hers is inflammatory breast cancer, scary because this is the mother-of-all breast cancers, very fast-growing. It is evident that she has taken Toby under her wing as she advises her to forget the boyfriend and concentrate on getting well. She tells me later that her fiance, her faithful Robert who sits in the waiting room with my husband, has an inoperable brain tumor. They are strong together.
A patient returns from the treatment room and changes. She emerges with a question, "anyone here triple negative"? Michelle answers "No, but I have a friend who is. She's doing well". This statuesque 67-year old is just finishing her 3rd round of radiation after 3 rounds of chemo. After she leaves Michelle explains. If you test estrogen, progestrin or Hers2 positive - you're in luck. There are drugs to treat you. Triple negative - nothing works. Now I understand why they told me "you're estrogen and progestrin positive - that's a good thing".
My claim to fame seems to be that I'm the only one among us who elected a bilateral mastectomy. Most have had lumpectomies. I'm not unhappy with my decision.
6:30 Jan is 79. She is trim and spry. Her doctor in Wisconsin sent her here to see the best, Dr. Kuske. She was diagnosed three months after her husband of 60 years died. He, she tells me, was in a wheelchair from polio for 62 years. I do the math. "So you married him when he was already in a wheelchair?" I ask. "I'd knew lots of boys," she says. "He was the special one." It's obvious, so is she. She has been staying in her brother's guest casita. Every morning she gets up, goes into the house, grabs a cup of coffee and climbs into bed with her brother and sister-in-law, who are having their coffee, and they talk. Picturing this makes me smile. Jan is having her last treatment. 6 o'clock Margaret talked her out of the oral chemo follow-up. She says this treatment has taken the stuffing out of her.
I am warmly greeted by at least one of these women every day. I look around and realize I am in good company. I'm glad to be a part of this club I never wanted to join. My husband calls us a band of sisters.
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