My birthday is next week. I remember my birthday epiphany in the MRI machine, and have since then encountered many occasions that have hammered home that machine's magnetic wisdom. A mother of one of my daughter's friends was diagnosed with liver cancer around the same time I was biopsied. She was deep into stage IV by the time she detected it and has since died, leaving a 16 year old daughter and husband. I am lucky, and I see birthdays as a numbered commodity for all of us.
The lure of more birthdays has kept me on my Tamoxifen and massive doses of antidepressants. It has led me back to my yoga practice without my old drive to accomplish more depth and advanced poses. Sun Salutes are enough for me. It has tempered my appetite for fatty, delicious foods and alcohol with very little regret...OK, maybe more than a little. Mostly missing the wine..sigh. It has also caused me to attack my riding with a refreshed vigor, kicking old priorities (read housework) to the curb so that I can climb into the saddle and conquer my "canterphobia," an unwanted side effect of the terror following my cancer diagnosis.
The desire for birthdays has changed me, mostly for the better.
This birthday will be my 49th. My wonderful husband and mother-in-law are throwing me a party. I don't think I have had one since I was 12. We will be celebrating the day of my birth AND the day after, when my new boobies are scheduled for installation. Soft, mushy implants to replace these painful 1958 Cadillac expanders. I will absolutely have the nipple reconstruction in the months that follow. My breast surgeon asked me: "headlights or no headlights?" I answered: "high beams." Some time in the distant future, after more than a few future birthdays, my Jean Harlow frankenboobies will make all the other ladies in the rest home jealous. They will go perfectly with my studded leather jacket and purple flame embellished wheelchair with a kick-start.
Monday, November 7, 2011
Monday, October 10, 2011
Day 200 Ignition
I sleep alot. Not the exhausted, gotta sleep sleep but the sullen, disinterested sleep interrupted by self incrimination and wish-I-hads. I was advised that this fatigue is a common side effect of Tamoxifen, but it is more than that.
When my anxiety became uncontrollable by other methods, my DOnc doubled down on my antidepressants. I would never do this under normal circumstances because the absence of my ups and downs really kills my creative nature, and I don't know how to engage with the world except through my creativity. I am really dulled by this and kick around the house seeing everything that needs doing and doing none of it, not because I'm depressed (though technically I am) but because I am uninspired by it.
I think alot about this blog and begin my process of writing only to be frustrated by my lack of vision followed by abandoning the task.
Lately though, I have started to feel a little better. The soupy miasma has lifted somewhat and I can peek under it's door. I am getting little shocks of animus, my sense of humor is returning, I have moments of unexpected efficiency. My motor is restarting.
Thanks to everyone who has commented, you helped bring me back.
When my anxiety became uncontrollable by other methods, my DOnc doubled down on my antidepressants. I would never do this under normal circumstances because the absence of my ups and downs really kills my creative nature, and I don't know how to engage with the world except through my creativity. I am really dulled by this and kick around the house seeing everything that needs doing and doing none of it, not because I'm depressed (though technically I am) but because I am uninspired by it.
I think alot about this blog and begin my process of writing only to be frustrated by my lack of vision followed by abandoning the task.
Lately though, I have started to feel a little better. The soupy miasma has lifted somewhat and I can peek under it's door. I am getting little shocks of animus, my sense of humor is returning, I have moments of unexpected efficiency. My motor is restarting.
Thanks to everyone who has commented, you helped bring me back.
Tuesday, August 30, 2011
Day 150 Tamoxifen
I'm not comparing it to Chemotherapy or Radiation and, honestly, I am grateful to have this drug available to keep me cancer free but Tamoxifen has been a bitch.
For the first month I felt very little, so when I started raging I thought I was really mad. But I wasn't, not really anyway. It was turbo boosted PMS resulting from my chemically induced change of life. The effect has been staggering and I believe anyone who knows me has seen me act very differently. Normally easy going, I am now perpetually anxious. My flash point is ridiculously low and I try to stay silent so I don't say anything angry that I don't mean...or worse what I DO mean. Silent is not my normal way of being, normally I am loud and outspoken with a fairly good sense of humor and I don't recognize this new person who is wearing my skin and vibrating with umbrage.
A good thing I'm being silent too, because I often stumble over words and forget what it was I was saying. The funny things I would say before die just above my epiglottis. My intelligence along with my libido has tanked. I am dulled.
Fatigue is also one of Tamoxifen's gift, but I can't sleep (see above.) Ambien, despite my attempts to sleep without it remains my evening's hero. The oxytocin released by my old breasts is no longer being released and my mood has darkened as I have become more and more a neuter.
This weekend I met a man who has recently been separated from his wife of many years. She is a 4 year breast cancer survivor on Tamoxifen; he says it changed everything about her. He looked sad when he said it. I am sure whatever fissure there was between them became a chasm and that frightens me.
Cancer treatments are never easy. I am clear that not everyone has the same side effects, and my DOnc says I might habituate to this fall out. In the meanwhile he has doubled my antidepressant. While many women have had success with all sorts of creams, since my tumors are completely estrogen/progesterone receptor positive I cannot use them. What I can use is gratitude, which has been my buoy for decades and I cling to it now like a shipwreck victim.
I am grateful for Tamoxifen, and the years it has given me. I will make the very best of them in spite of their unique and unforeseen difficulties. Many cultures maintain that women's power becomes manifest after her change of life and I am sure that is what is happening to me right now; those blank spaces in my mind are places to be filled by new knowledge and ways of thinking; I am grateful for this change because it enlivens and challenges me. I am grateful for all of the women who have moved forward from here and left a trail for me to follow. I know I will make it and that I am not alone.
For the first month I felt very little, so when I started raging I thought I was really mad. But I wasn't, not really anyway. It was turbo boosted PMS resulting from my chemically induced change of life. The effect has been staggering and I believe anyone who knows me has seen me act very differently. Normally easy going, I am now perpetually anxious. My flash point is ridiculously low and I try to stay silent so I don't say anything angry that I don't mean...or worse what I DO mean. Silent is not my normal way of being, normally I am loud and outspoken with a fairly good sense of humor and I don't recognize this new person who is wearing my skin and vibrating with umbrage.
A good thing I'm being silent too, because I often stumble over words and forget what it was I was saying. The funny things I would say before die just above my epiglottis. My intelligence along with my libido has tanked. I am dulled.
Fatigue is also one of Tamoxifen's gift, but I can't sleep (see above.) Ambien, despite my attempts to sleep without it remains my evening's hero. The oxytocin released by my old breasts is no longer being released and my mood has darkened as I have become more and more a neuter.
This weekend I met a man who has recently been separated from his wife of many years. She is a 4 year breast cancer survivor on Tamoxifen; he says it changed everything about her. He looked sad when he said it. I am sure whatever fissure there was between them became a chasm and that frightens me.
Cancer treatments are never easy. I am clear that not everyone has the same side effects, and my DOnc says I might habituate to this fall out. In the meanwhile he has doubled my antidepressant. While many women have had success with all sorts of creams, since my tumors are completely estrogen/progesterone receptor positive I cannot use them. What I can use is gratitude, which has been my buoy for decades and I cling to it now like a shipwreck victim.
I am grateful for Tamoxifen, and the years it has given me. I will make the very best of them in spite of their unique and unforeseen difficulties. Many cultures maintain that women's power becomes manifest after her change of life and I am sure that is what is happening to me right now; those blank spaces in my mind are places to be filled by new knowledge and ways of thinking; I am grateful for this change because it enlivens and challenges me. I am grateful for all of the women who have moved forward from here and left a trail for me to follow. I know I will make it and that I am not alone.
Friday, August 19, 2011
Day 139 Laugh Dammit
I shamelessly play the cancer card while reclining in my overstuffed La Z Boy. Can you walk the dogs? I don't want to watch the military channel, I wanna watch America's Got Talent. Can you put my empty bowl in the dishwasher, and then vacuum and clean my bathroom? Please, I have caaaancerrrrrrr.
And then we laugh. Even through the grey funk of my post treatment depression and medically induced "change of life" we cackle and hoot because life is good and cancer is occasionally funny. As I recover from, and exist through my treatment I lean heavily on my sense of humor to pull me through those moments of physical discomfort and menopause induced disorientation. My daughter thinks my seriously lowered IQ is hilarious and my husband takes a perverse pleasure in being the one who is right most of the time. When people call to cry and gnash their teeth over my predicament my husband answers the phone and then acts like he's actually going to let them speak to me, just to seen my horrified reaction. Cancer is a grim thing, doing it with humor takes panache.
Though there is no scientific evidence that humor effects cancer cells in any way it does effect other important things, like your mental health and feelings of well being, without the ability to laught at it, life as a cancer patient can really suck. I take every opportunity to laugh at cancer and every bit of what follows. Here's something I found while searching for funny cancer shirts. I hope I got the author right 'cause it's one of my favorites.
Top 11 Ways to Know You are A Cancer Survivor
by Emily Hollenberg, 4-year breast cancer survivor
11. Your alarm clock goes off at 6 a.m. and you're glad to hear it.
10. April 15th is still a great day.
9. Your mother-in-law invites you to lunch and you just say NO.
8. You're back in the family rotation to take out the garbage.
7. When you no longer have an urge to choke the person who says, "all you need to beat cancer is the right attitude."
6. When your dental floss runs out and you buy 1000 yards.
5. When you use your toothbrush to brush your teeth and not comb your hair.
4. You have a chance to buy additional life insurance but you buy a convertible instead.
3. Your doctor tells you to lose weight and do something about your cholesterol and you actually listen.
2. When your biggest annual celebration is again your birthday, not the day you were diagnosed.
1. When you use your Visa card more than your insurance card.
And then we laugh. Even through the grey funk of my post treatment depression and medically induced "change of life" we cackle and hoot because life is good and cancer is occasionally funny. As I recover from, and exist through my treatment I lean heavily on my sense of humor to pull me through those moments of physical discomfort and menopause induced disorientation. My daughter thinks my seriously lowered IQ is hilarious and my husband takes a perverse pleasure in being the one who is right most of the time. When people call to cry and gnash their teeth over my predicament my husband answers the phone and then acts like he's actually going to let them speak to me, just to seen my horrified reaction. Cancer is a grim thing, doing it with humor takes panache.
Though there is no scientific evidence that humor effects cancer cells in any way it does effect other important things, like your mental health and feelings of well being, without the ability to laught at it, life as a cancer patient can really suck. I take every opportunity to laugh at cancer and every bit of what follows. Here's something I found while searching for funny cancer shirts. I hope I got the author right 'cause it's one of my favorites.
Top 11 Ways to Know You are A Cancer Survivor
by Emily Hollenberg, 4-year breast cancer survivor
11. Your alarm clock goes off at 6 a.m. and you're glad to hear it.
10. April 15th is still a great day.
9. Your mother-in-law invites you to lunch and you just say NO.
8. You're back in the family rotation to take out the garbage.
7. When you no longer have an urge to choke the person who says, "all you need to beat cancer is the right attitude."
6. When your dental floss runs out and you buy 1000 yards.
5. When you use your toothbrush to brush your teeth and not comb your hair.
4. You have a chance to buy additional life insurance but you buy a convertible instead.
3. Your doctor tells you to lose weight and do something about your cholesterol and you actually listen.
2. When your biggest annual celebration is again your birthday, not the day you were diagnosed.
1. When you use your Visa card more than your insurance card.
Monday, August 8, 2011
Day 128 Unveiling
Yesterday the family travelled like a gypsy caravan to unveil Lee Lee's grave marker. It's hard to believe that it's been a year since she passed away, her absence has left a big hole in the fabric of our clan and her memory is a blessing. She would be pleased that all of her boys were there, along with their wives. My husband was her first grandchild, and my children her first great grandchildren and we wouldn't have missed it for the world.
We gathered around the wrapped marker, next to her husband who preceded her. The weather was cloudy which is a blessing in the steaming southern summer. We wasted no time knowing the sun was only temporarily foiled. As one we began the blessings, while we removed the cover from her simple stone, something breathtaking happened. A single monarch butterfly flew across the cemetery and landed on the headstone and then took a short hop to Lee Lee's grave and landed. During the service it just stood there, occasionally flapping it's wings. It wasn't until we were saying Kaddish, which affirms our love for G.d and concludes the service that the butterfly took off again.
My daughter, who has recently taken up photography, was livid that she didn't have her camera and we had to assure her that some events aren't meant to be captured on film, but are held in our hearts permanently.
We gathered around the wrapped marker, next to her husband who preceded her. The weather was cloudy which is a blessing in the steaming southern summer. We wasted no time knowing the sun was only temporarily foiled. As one we began the blessings, while we removed the cover from her simple stone, something breathtaking happened. A single monarch butterfly flew across the cemetery and landed on the headstone and then took a short hop to Lee Lee's grave and landed. During the service it just stood there, occasionally flapping it's wings. It wasn't until we were saying Kaddish, which affirms our love for G.d and concludes the service that the butterfly took off again.
My daughter, who has recently taken up photography, was livid that she didn't have her camera and we had to assure her that some events aren't meant to be captured on film, but are held in our hearts permanently.
Friday, July 29, 2011
Day 118 Horse Crazy
Yesterday, for the first time since my (first) surgery I tacked up a horse and I rode. Granted, she is an old mare, with some age related lameness in her rear legs but she's a steady Eddie pro and a safe bet for my first mount. I had a lesson under my dear friend who tormented my legs with all sorts of two point exercises and short bursts of trot.
My husband had puppies when I told him I was going to take my first lesson. He has been my caretaker and closest friend through all of this and has seen the depth of my weakness and knows how far I have to travel yet. Still, my surgeon gave me his full release and there's a chance that, if I can ride again, I won't be so crazed and cranky. Even with that behind me hubby was not happy, resigned yes, but definitely not happy. To live with me you must accept the things you cannot change.
Since I was a girl I have been horse crazy. Helping my friends take care of their horses in exchange for an occasional ride, paying for lessons, working like a slave in some fancy barns where I learned to fling poo, maintain tack, groom and listened to trainers talking about horses. I read all horse books obsessively: My Friend Flicka, Misty of Chincotegue (the whole series), the Godolphin Arabian, the Black Stallion, horse encyclopedias and breed anthologies. I have been kicked, stomped, run over, bitten and just generally roughed up by the objects of my affection with no derogatory effect. I have kept that fire burning, optimistic that one day I would be a horse owner.
Life gave me that opportunity at age 45, when I brought home Chrome, the most beautiful horse I and anyone else had ever seen. This horse was a supermodel, splendid in every way except one: he had an unsolvable respiratory issue and so back he went. My second horse was Murphy, a Trekehner/Warmblood schoolmaster, but we didn't get along in the saddle, his movement was huge and I am quite little. Incapable of generating equally measured movement. I thought time and work would solve our issues but they didn't, and nearly three years later I donated him to a girls college equestrian team that I am very familiar with, and where I knew he would receive great care and affection. I could not sell him to a stranger.
Which leads us to Dee, my little appaloosa mare. She is coming along phenomenally well under her fabulous trainer and is gaining balance while making some baby steps toward collection. Riding her is like climbing the Empire State building to me, but it is a goal I am working toward ever day I get a chance to ride another horse. My poor husband would rather I just give up this foolishness, but I can't. My love for this is an elemental part of who I am and when I ride, I link myself to a brave girl who caught the city bus to arrive at the barn(s) for 5:00 a.m. chores, taking another bus to High School with mud on her shoes, determined to survive another day of teenaged angst, and make her life into something of her own design.
My life has been a life of long term goals born in a wild heart. I am not sure if it is the goals or the undomesticated nature of my heart that have made me so determined frankly, but whatever it is it has served me well because I am still going strong. I wanted to live, then to live to ride my horse, and now just to ride my horse.
My husband had puppies when I told him I was going to take my first lesson. He has been my caretaker and closest friend through all of this and has seen the depth of my weakness and knows how far I have to travel yet. Still, my surgeon gave me his full release and there's a chance that, if I can ride again, I won't be so crazed and cranky. Even with that behind me hubby was not happy, resigned yes, but definitely not happy. To live with me you must accept the things you cannot change.
Since I was a girl I have been horse crazy. Helping my friends take care of their horses in exchange for an occasional ride, paying for lessons, working like a slave in some fancy barns where I learned to fling poo, maintain tack, groom and listened to trainers talking about horses. I read all horse books obsessively: My Friend Flicka, Misty of Chincotegue (the whole series), the Godolphin Arabian, the Black Stallion, horse encyclopedias and breed anthologies. I have been kicked, stomped, run over, bitten and just generally roughed up by the objects of my affection with no derogatory effect. I have kept that fire burning, optimistic that one day I would be a horse owner.
Life gave me that opportunity at age 45, when I brought home Chrome, the most beautiful horse I and anyone else had ever seen. This horse was a supermodel, splendid in every way except one: he had an unsolvable respiratory issue and so back he went. My second horse was Murphy, a Trekehner/Warmblood schoolmaster, but we didn't get along in the saddle, his movement was huge and I am quite little. Incapable of generating equally measured movement. I thought time and work would solve our issues but they didn't, and nearly three years later I donated him to a girls college equestrian team that I am very familiar with, and where I knew he would receive great care and affection. I could not sell him to a stranger.
Which leads us to Dee, my little appaloosa mare. She is coming along phenomenally well under her fabulous trainer and is gaining balance while making some baby steps toward collection. Riding her is like climbing the Empire State building to me, but it is a goal I am working toward ever day I get a chance to ride another horse. My poor husband would rather I just give up this foolishness, but I can't. My love for this is an elemental part of who I am and when I ride, I link myself to a brave girl who caught the city bus to arrive at the barn(s) for 5:00 a.m. chores, taking another bus to High School with mud on her shoes, determined to survive another day of teenaged angst, and make her life into something of her own design.
My life has been a life of long term goals born in a wild heart. I am not sure if it is the goals or the undomesticated nature of my heart that have made me so determined frankly, but whatever it is it has served me well because I am still going strong. I wanted to live, then to live to ride my horse, and now just to ride my horse.
Saturday, July 23, 2011
Day 112 Treasure Bench
The kids have been gone for a week, cruising with their cousin and grandparents, living in the lap of luxury and extravagantly unconcerned with what is going on at home. And so I am cleaning their rooms.
This could be a tale of woe, stink, and undead dust bunnies; in fact there was plenty of that and, if I hadn't bumped into my daughter's storage bench causing the front of it to fall off, that would be all that it was. As the contents of her life of hoarding came bursting out all over my feet I realized that something had to be done. I had to repair that stupid bench and avoid my teen aged daughter's cat fit. Simultaneously.
I was a teenager once, though my children don't believe it, and the thought of having my mother in my stuff would fill me with helpless fury. Certainly she read everything, trying to suss out my misdemeanors and motivations. Once she found a photo of my boyfriend (who I was not allowed to see) and me at a local amusement park (that I was not allowed to go to.) I found it tacked to the wall with a steak knife through his eye. Sweet memories.
But I digress. After about 4 hours of hammering and 3 trips to the hardware store I had repaired her sacred treasure chest and got about refilling it. I did it all without my glasses on so that I wouldn't invade her privacy by reading anything. Still, I knew what most things were since they had been there for years. She keeps everything that was ever meaningful in her life. Her autism is a closed world until you get to see her collections. It is only when you see the poetry, journals, drawings, boxes filled with unspeakable beauty that you understand where it is that she dwells.
I filled a box with every birthday card she has ever received and made a pile of all of her drawing pads including her first, filled with art that has become more sophisticated and compelling. Her journals made another stack. Some were filled, some had only a few pages of writing but they were all there. Her anthology.
Every model horse I collected for her, when we shared that passion, and two Barbies wrapped in gauze like mummies with jewels tucked into the wrappings to assure their passage into the afterlife. My breath would leave me, like I had been struck in my center when I ran across another object of her inner life made manifest. A blue sparkly box filled with polished stones and beads, her "good deed" jar stuffed with Jones Soda caps and every fortune cookie fortune she has ever been able to collect or steal. A ring holder, the kind that looks like a cupped hand, so laden with rings and bracelets that it looks like the pleading fingers of one who needs rescue. One solitary doll.
Through unfocused eyes, all of that stuff no longer looked like a hoarded cache, but rare treasure. My lack of glasses couldn't hide the richness and depth of feeling obscured by her aloneness. She is authentically an ardent lover of art and fiction, a child happily wrapped in family and her world viewed through unmagnified eyes was my weeks trip to another world.
This could be a tale of woe, stink, and undead dust bunnies; in fact there was plenty of that and, if I hadn't bumped into my daughter's storage bench causing the front of it to fall off, that would be all that it was. As the contents of her life of hoarding came bursting out all over my feet I realized that something had to be done. I had to repair that stupid bench and avoid my teen aged daughter's cat fit. Simultaneously.
I was a teenager once, though my children don't believe it, and the thought of having my mother in my stuff would fill me with helpless fury. Certainly she read everything, trying to suss out my misdemeanors and motivations. Once she found a photo of my boyfriend (who I was not allowed to see) and me at a local amusement park (that I was not allowed to go to.) I found it tacked to the wall with a steak knife through his eye. Sweet memories.
But I digress. After about 4 hours of hammering and 3 trips to the hardware store I had repaired her sacred treasure chest and got about refilling it. I did it all without my glasses on so that I wouldn't invade her privacy by reading anything. Still, I knew what most things were since they had been there for years. She keeps everything that was ever meaningful in her life. Her autism is a closed world until you get to see her collections. It is only when you see the poetry, journals, drawings, boxes filled with unspeakable beauty that you understand where it is that she dwells.
I filled a box with every birthday card she has ever received and made a pile of all of her drawing pads including her first, filled with art that has become more sophisticated and compelling. Her journals made another stack. Some were filled, some had only a few pages of writing but they were all there. Her anthology.
Every model horse I collected for her, when we shared that passion, and two Barbies wrapped in gauze like mummies with jewels tucked into the wrappings to assure their passage into the afterlife. My breath would leave me, like I had been struck in my center when I ran across another object of her inner life made manifest. A blue sparkly box filled with polished stones and beads, her "good deed" jar stuffed with Jones Soda caps and every fortune cookie fortune she has ever been able to collect or steal. A ring holder, the kind that looks like a cupped hand, so laden with rings and bracelets that it looks like the pleading fingers of one who needs rescue. One solitary doll.
Through unfocused eyes, all of that stuff no longer looked like a hoarded cache, but rare treasure. My lack of glasses couldn't hide the richness and depth of feeling obscured by her aloneness. She is authentically an ardent lover of art and fiction, a child happily wrapped in family and her world viewed through unmagnified eyes was my weeks trip to another world.
Tuesday, July 12, 2011
Day 101 Dallas's Gift
I have a secret. Silently, I have been incubating and nurturing it until it becomes strong enough to survive as a real truth. All of my hopes have been pinned on it but I have had to allow it to become vivid before sharing it. I have to believe it myself.
A little over a week ago I received the results of my PET scan, bone density, and complete biochemical screening. My oncologist grinned like a boy as he told me that my bone density was that of a 20-30 year old, and with the exception of an elevated FSH (Follicle Stimulating Hormone, which rises when you begin to slow in ovulation) my body's measured biochemistry is that of a young adult. Most importantly, my PET scan could not detect a single cell of cancer anywhere in my body.
I am as young as I feel and I am cancer free. I will not have to have chemotherapy or radiation, only 5 years of Tamoxifen. My husband and I pumped our fists and yelled: "Yes." He told us we did everything right and that we were helped in that by educating ourselves and making educated decisions. For sure, none of this would have been possible if I hadn't been hit in the chest by Dallas, a mammogram alone wouldn't have detected my carcinoma until it was much bigger, possibly stage 3. He told us that our choice of surgeons, treatments, tests and attitude delivered me to him wrapped up with a ribbon; a survivor.
With a 3-5% chance of reoccurrance, odds are I will live to be an old woman with a great story about how a horse saved my life.
I still can't believe it.
A little over a week ago I received the results of my PET scan, bone density, and complete biochemical screening. My oncologist grinned like a boy as he told me that my bone density was that of a 20-30 year old, and with the exception of an elevated FSH (Follicle Stimulating Hormone, which rises when you begin to slow in ovulation) my body's measured biochemistry is that of a young adult. Most importantly, my PET scan could not detect a single cell of cancer anywhere in my body.
I am as young as I feel and I am cancer free. I will not have to have chemotherapy or radiation, only 5 years of Tamoxifen. My husband and I pumped our fists and yelled: "Yes." He told us we did everything right and that we were helped in that by educating ourselves and making educated decisions. For sure, none of this would have been possible if I hadn't been hit in the chest by Dallas, a mammogram alone wouldn't have detected my carcinoma until it was much bigger, possibly stage 3. He told us that our choice of surgeons, treatments, tests and attitude delivered me to him wrapped up with a ribbon; a survivor.
With a 3-5% chance of reoccurrance, odds are I will live to be an old woman with a great story about how a horse saved my life.
I still can't believe it.
Wednesday, July 6, 2011
Day 95 Hermitage
I used to own a yoga studio. 10 years ago, in the deep, heavily Christian, buckle of the bible belt such an endeavor was laughable and doomed to failure. I loved yoga and my students but such love did not sustain us and eventually we closed. But before that happened something extraordinary happened in my little studio.
I rented a room to a journalist, and the local Dharma center run by a woman who was working to be ordained a buddhist monk. She had shaved her head, and given away all of her worldly possessions and whatever else she had to do (I don't remember) and all she needed was a place for her ordination. It made sense for me to host it since I had the space. Little did I know we would be hosting a Geshe and his traveling retinue of brother monks. They would perform the ordination and then create at a local university,a Mandala for peace after the 9/11 attacks. Fresh from the Gyuto Tantric Monastery in Dharamsala, India, home of the Dalai Lama they were a torrent of Tibetan, brilliant smiles, broken english and saffron robes.
When being introduced, or simply making conversation a monk would look deeply at you and perhaps take a breath. It can be somewhat anxious meeting of the eyes as your new aquaintance uses his spiritual x ray vision to see you in your psychic underwear. It was of the utmost importance to truly be there with an individual without any desire to judge or evade. The same intention was ideally brought to everything that they do. They do not desire to be anywhere else or doing anything other than what they are doing at the moment. Departures were marked with hands pressed together as in prayer and Namaste: "the light in me sees the light in you."
I am not an ascetic, not even close. But it has dawned on me that cancer and it's treatments can be, in themselves an ascetic's voyage where an individual's trappings are stripped away and you face the you that was hermited in the deep spaces behind your carefully constructed appearance. It takes some guts to recognize the parts of yourself that you have declared false or too damaged to project. Coming to terms with your deepest self is a uncomfortable voyage past your psyche to behold and nurture the light within yourself. It is an act of courage and forgiveness to let go of your selfdom and allow yourself to become more authentic. So that you can really be seen.
I rented a room to a journalist, and the local Dharma center run by a woman who was working to be ordained a buddhist monk. She had shaved her head, and given away all of her worldly possessions and whatever else she had to do (I don't remember) and all she needed was a place for her ordination. It made sense for me to host it since I had the space. Little did I know we would be hosting a Geshe and his traveling retinue of brother monks. They would perform the ordination and then create at a local university,a Mandala for peace after the 9/11 attacks. Fresh from the Gyuto Tantric Monastery in Dharamsala, India, home of the Dalai Lama they were a torrent of Tibetan, brilliant smiles, broken english and saffron robes.
When being introduced, or simply making conversation a monk would look deeply at you and perhaps take a breath. It can be somewhat anxious meeting of the eyes as your new aquaintance uses his spiritual x ray vision to see you in your psychic underwear. It was of the utmost importance to truly be there with an individual without any desire to judge or evade. The same intention was ideally brought to everything that they do. They do not desire to be anywhere else or doing anything other than what they are doing at the moment. Departures were marked with hands pressed together as in prayer and Namaste: "the light in me sees the light in you."
I am not an ascetic, not even close. But it has dawned on me that cancer and it's treatments can be, in themselves an ascetic's voyage where an individual's trappings are stripped away and you face the you that was hermited in the deep spaces behind your carefully constructed appearance. It takes some guts to recognize the parts of yourself that you have declared false or too damaged to project. Coming to terms with your deepest self is a uncomfortable voyage past your psyche to behold and nurture the light within yourself. It is an act of courage and forgiveness to let go of your selfdom and allow yourself to become more authentic. So that you can really be seen.
Wednesday, June 29, 2011
Day 92 Sucking in the Whitewash
I was born and raised a Californian, and spent many days in the cold Pacific Ocean. Large waves, big rocks and sunburned noses filled my teenage years. I remember the exhilaration of riding those large powerful breakers with nostalgia. The Gulf Coast with it's sugar sand and warm water do not compare to the savage power of that crushing surf. If you aren't savvy you might not know to dive through the walls of those blue waves, toward the top so as not to be caught underneath the crush all of that water.
We called it "sucking in the white wash." When the power and weight of all of that water surging in and returning creates a vortex that forces you down into the white foam near the bottom and tosses you around like a rag doll on spin cycle, helpless to break out until the ocean is merciful and you are surrendered. Disoriented, you swim like mad to reach the surface before the next wave comes or your breath runs out.
That is how I feel right now. Several hours after having my drains pulled (the second time was much easier) I started to feel unwell, but drove my daughter anyway to her long delayed hair styling appointment. It was not long after arriving at the salon that I began to feel seriously sick. Stupidly I made arrangements for my daughter to get back home and then drove myself back. I got home safely, but if I had my wits about me I would have made someone come and get me, I do not remember much of that drive. My temperature upon arrival was 102.8 and rising.
The following saga includes and urgent care center, a stupid doctor, IV for antibiotics and dehydration. Infection #2, this time it's staph but we're on it from the start. I feel like garbage and am wiped out, the meds are making me sick, but the fever is gone. My lungs are screaming as I swim like mad for the surface.
We called it "sucking in the white wash." When the power and weight of all of that water surging in and returning creates a vortex that forces you down into the white foam near the bottom and tosses you around like a rag doll on spin cycle, helpless to break out until the ocean is merciful and you are surrendered. Disoriented, you swim like mad to reach the surface before the next wave comes or your breath runs out.
That is how I feel right now. Several hours after having my drains pulled (the second time was much easier) I started to feel unwell, but drove my daughter anyway to her long delayed hair styling appointment. It was not long after arriving at the salon that I began to feel seriously sick. Stupidly I made arrangements for my daughter to get back home and then drove myself back. I got home safely, but if I had my wits about me I would have made someone come and get me, I do not remember much of that drive. My temperature upon arrival was 102.8 and rising.
The following saga includes and urgent care center, a stupid doctor, IV for antibiotics and dehydration. Infection #2, this time it's staph but we're on it from the start. I feel like garbage and am wiped out, the meds are making me sick, but the fever is gone. My lungs are screaming as I swim like mad for the surface.
Wednesday, June 22, 2011
Day 91 Phenomenal
I told the lab technician that my blood was very much in demand lately and must have a high gold content because since my cancer diagnosis I have never had less than 6 vials of blood drawn. This, I say, must be the reason why she can't find a single vein in my right arm that will let blood. She is kind and laughs at my lame joke because she knows that the searching, boring needle is painful and laughter better than a left hook to the jaw.
It is my first visit to my new oncologist's office, which is also the local cancer center, and everyone here is very nice. Really, too nice. I am set on edge by their overwhelming sympathy and sad eyes. It is making me irritable. I know that these people have seen a great deal of pain and suffering...I just don't want it transferred to me. Can't they see past my bulging drains and shaky gait to my inner conqueror?
All of the volunteers here are cancer conquerors and they are a spunky bunch. My volunteer took one look at my drains and said "Tram Flap?" "No," I responded, "Implants with a revision." "I hate my Tram Flap, you chose the right thing." We compared our infections, deadhesions and cellulitis and I was reassured by her frank and matter of fact friendliness. It was good to discuss it with someone who understood. We both stood for a moment on the same side of the valley and sighed, agreeing that our bygone travel was some gnarley shit. And then we said goodbye.
I was passed from hand to hand before I met The Man. I really like him, smart and kind with a good sense of humor. He responded really well to our active style of cancer management and we were grateful for that. Not every physician appreciates that quality in a patient. Patients acting as their own advocates can be very time consuming.
We discussed my tumor pathology, size (1.3cm), focal structure (3), hormone receptor status (100%, phenomenal), Her2 (0), Oncotype score (4, also phenomenal) and how very lucky I was to have been hit in the chest, as mammography would have been unlikely to uncover this until it was quite a bit larger. Typically, a woman as young as I would be subjected to chemotherapy, because I have so many years left and everyone wants to be sure it won't come back. But because of my phenomenal hormone receptor status and Oncotype scores we can omit that and use only Estrogen inhibitors which will throw me into menopause or inhibit postmenopausal estrogen production. This will all depend on where I am on the reproductive timeline.
He said we did the right things. He said my chance of with reoccurance with treatment is 3-5%. I still can't believe it. He said I could thank G.d for that horse, I will have a great story and some scars, but I will be showing those off until I am very, very old.
It is my first visit to my new oncologist's office, which is also the local cancer center, and everyone here is very nice. Really, too nice. I am set on edge by their overwhelming sympathy and sad eyes. It is making me irritable. I know that these people have seen a great deal of pain and suffering...I just don't want it transferred to me. Can't they see past my bulging drains and shaky gait to my inner conqueror?
All of the volunteers here are cancer conquerors and they are a spunky bunch. My volunteer took one look at my drains and said "Tram Flap?" "No," I responded, "Implants with a revision." "I hate my Tram Flap, you chose the right thing." We compared our infections, deadhesions and cellulitis and I was reassured by her frank and matter of fact friendliness. It was good to discuss it with someone who understood. We both stood for a moment on the same side of the valley and sighed, agreeing that our bygone travel was some gnarley shit. And then we said goodbye.
I was passed from hand to hand before I met The Man. I really like him, smart and kind with a good sense of humor. He responded really well to our active style of cancer management and we were grateful for that. Not every physician appreciates that quality in a patient. Patients acting as their own advocates can be very time consuming.
We discussed my tumor pathology, size (1.3cm), focal structure (3), hormone receptor status (100%, phenomenal), Her2 (0), Oncotype score (4, also phenomenal) and how very lucky I was to have been hit in the chest, as mammography would have been unlikely to uncover this until it was quite a bit larger. Typically, a woman as young as I would be subjected to chemotherapy, because I have so many years left and everyone wants to be sure it won't come back. But because of my phenomenal hormone receptor status and Oncotype scores we can omit that and use only Estrogen inhibitors which will throw me into menopause or inhibit postmenopausal estrogen production. This will all depend on where I am on the reproductive timeline.
He said we did the right things. He said my chance of with reoccurance with treatment is 3-5%. I still can't believe it. He said I could thank G.d for that horse, I will have a great story and some scars, but I will be showing those off until I am very, very old.
Wednesday, June 15, 2011
Day 84 Yarn Balls
Wednesday has come and gone and I still have two drains sticking out of my chest, a little more than 5 inches below my arm pit, held in place by a single stitch and tunneling between my expanders and chest wall. Unpleasant would be a tactful word for them, painful is more accurate. Painful because they hurt of course, but also because they separate me from the things I want to do, like drive, work, sleep on my sides, exercise, ride my horse, visit my horse, drive to visit my horse. I have been confined for 6 weeks now and the surgeon won't pull them out until my daily volume decreases by 20 ccs. I might lose my mind.
I tried teaching myself to knit but have been forced to admit that, while skilled in many other things, I am a hopeless knitter. My yarn balls are now being appreciated by my Fanny, my Blue Heeler puppy. Poor Fanny, she looks at me like I have failed her with my confinement. No more long days in the pastures, eating horse poop, splashing through mud puddles and herding any beast sorry enough to stand still. Like most Blue Heelers she needs lots of activity and sadly has none. She vents by shredding anything she can find and laying half dead roaches at my feet.
We are all coping the best we can. My aspie daughter told me that I am ruining her summer, which should be spent with friends preferably in a pool and NOT taking care of her mother. She tells it like it is, no guessing necessary with her. My son is lucky enough to spend this month at camp, but was reluctant to slip away while I still need care. My poor husband enters the house holding a dining chair in one hand and a whip in the other, just in case his tiger of a wife decides to leap off her recliner and at his exposed throat.
Undeniably as long as my body keeps draining I will have these drains anchoring me like a boat in a harbor. But a harbor is not where boats are meant to be and I dream of sailing away.
I tried teaching myself to knit but have been forced to admit that, while skilled in many other things, I am a hopeless knitter. My yarn balls are now being appreciated by my Fanny, my Blue Heeler puppy. Poor Fanny, she looks at me like I have failed her with my confinement. No more long days in the pastures, eating horse poop, splashing through mud puddles and herding any beast sorry enough to stand still. Like most Blue Heelers she needs lots of activity and sadly has none. She vents by shredding anything she can find and laying half dead roaches at my feet.
We are all coping the best we can. My aspie daughter told me that I am ruining her summer, which should be spent with friends preferably in a pool and NOT taking care of her mother. She tells it like it is, no guessing necessary with her. My son is lucky enough to spend this month at camp, but was reluctant to slip away while I still need care. My poor husband enters the house holding a dining chair in one hand and a whip in the other, just in case his tiger of a wife decides to leap off her recliner and at his exposed throat.
Undeniably as long as my body keeps draining I will have these drains anchoring me like a boat in a harbor. But a harbor is not where boats are meant to be and I dream of sailing away.
Thursday, June 9, 2011
Day 78 Lucky Girl
A gurney ride on Versed is like Mr. Toad's Wild Ride, but it doesn't end with a steamy chuff and the drag of brakes. In place of the costumed ride operator there was a masked nurse anesthetist the brilliant blue of the surgical lamps and then nothing.
Asleep again while my reconstructive surgeon worked to understand why both of my incisions were unraveling. Why the unrelenting edema soaked dressing after dressing, making my husband and I professional maxipad engineers. Why pain that won't surrender to pain killers or muscle relaxers. Hopefully ending 4 escalating weeks of suffering.
I expect to wake up without expanders, with drains and possibly a PICC line. I expect the worst so I won't be disappointed or shocked. My husband has to the be person to tell me what the outcome of the surgery is when I wake up, I don't know why. I guess I want the results to exist within our private bubble so that we can adjust to it before taking on other people's expectations and possibly disappointment. Probably mostly to hear his voice tell me, whatever happens, we'll be OK.
When I woke it was to a calm, attentive and thankfully mature nurse who quickly returned me to my room and kindly advised me that there were no orders for a morphine pump. I believe I was equally calm and mature when I told her to advise my surgeon that those orders were bull crap and morphine was the least he could do after cutting my chest open. Again. Thanks to her quick actions I had my precious button in my hand in a very short period of time and spent the rest of the night pushing it in my sleep. Before I slipped off my husband told me that the Alloderm, which serves as a sling that holds the weight of my expanders and future implants had failed to adhere to my chest wall on both sides. It was unthinkable, and my surgeon had not seen this failure on both sides before. There was no infection visible to the naked eye, but cultures were taken and results would emerge in the next few days. He replaced the expanders and added an extra 100 ccs of saline to take up the space my edema had created. Waste not want not. I had four new drains and no PICC.
My husband and In-Laws left me for the night in the charge of a private nurse and drove the one and a half hour drive back home. My husband has to work tomorrow, but my In-Laws will return and take me home if I am allowed, which I am. Doped with extra strength pain medication I am packed into the seat of the car with my trusty arm pillows and driven home to my own bed.
Monday morning my infectious disease doctor called to tell me that I have a gram negative bacteria that was not vulnerable to any of the 5 antibiotic I had so far taken, and prescribed a 6th. It seems to be working because I am much more comfortable if that can be said while enduring fuller expanders.
Since surgery I have been sleeping because that is all I am capable of. A human should not have two major surgeries within a month if it is at all avoidable. The fatigue and inevitable depression is crushing and I have been in a bleak state, but I am trying to pull myself together again.
Yesterday I made my bed. It was a statement that marked the end of bedridden confinement, helpless as a turtle on it's back. Today I made the bed again and helped my son get packed for camp. Tomorrow I will make my bed and take a long trip, surrender some drains and take another long trip home. Every day, stronger and more capable. I will exchange my grim endurance for hopefulness. I have reason to be optimistic, while I was sleeping away the week my Oncotype score came in the mail; on a scale of 0 to 100 (best to worst) my tumor scored a 4.
I'm a lucky girl.
Asleep again while my reconstructive surgeon worked to understand why both of my incisions were unraveling. Why the unrelenting edema soaked dressing after dressing, making my husband and I professional maxipad engineers. Why pain that won't surrender to pain killers or muscle relaxers. Hopefully ending 4 escalating weeks of suffering.
I expect to wake up without expanders, with drains and possibly a PICC line. I expect the worst so I won't be disappointed or shocked. My husband has to the be person to tell me what the outcome of the surgery is when I wake up, I don't know why. I guess I want the results to exist within our private bubble so that we can adjust to it before taking on other people's expectations and possibly disappointment. Probably mostly to hear his voice tell me, whatever happens, we'll be OK.
When I woke it was to a calm, attentive and thankfully mature nurse who quickly returned me to my room and kindly advised me that there were no orders for a morphine pump. I believe I was equally calm and mature when I told her to advise my surgeon that those orders were bull crap and morphine was the least he could do after cutting my chest open. Again. Thanks to her quick actions I had my precious button in my hand in a very short period of time and spent the rest of the night pushing it in my sleep. Before I slipped off my husband told me that the Alloderm, which serves as a sling that holds the weight of my expanders and future implants had failed to adhere to my chest wall on both sides. It was unthinkable, and my surgeon had not seen this failure on both sides before. There was no infection visible to the naked eye, but cultures were taken and results would emerge in the next few days. He replaced the expanders and added an extra 100 ccs of saline to take up the space my edema had created. Waste not want not. I had four new drains and no PICC.
My husband and In-Laws left me for the night in the charge of a private nurse and drove the one and a half hour drive back home. My husband has to work tomorrow, but my In-Laws will return and take me home if I am allowed, which I am. Doped with extra strength pain medication I am packed into the seat of the car with my trusty arm pillows and driven home to my own bed.
Monday morning my infectious disease doctor called to tell me that I have a gram negative bacteria that was not vulnerable to any of the 5 antibiotic I had so far taken, and prescribed a 6th. It seems to be working because I am much more comfortable if that can be said while enduring fuller expanders.
Since surgery I have been sleeping because that is all I am capable of. A human should not have two major surgeries within a month if it is at all avoidable. The fatigue and inevitable depression is crushing and I have been in a bleak state, but I am trying to pull myself together again.
Yesterday I made my bed. It was a statement that marked the end of bedridden confinement, helpless as a turtle on it's back. Today I made the bed again and helped my son get packed for camp. Tomorrow I will make my bed and take a long trip, surrender some drains and take another long trip home. Every day, stronger and more capable. I will exchange my grim endurance for hopefulness. I have reason to be optimistic, while I was sleeping away the week my Oncotype score came in the mail; on a scale of 0 to 100 (best to worst) my tumor scored a 4.
I'm a lucky girl.
Tuesday, May 31, 2011
Day 69 Unavoidable Setbacks
I want a beer. A cold sweaty cocktail would be nice as well. I could sit, as I used to, on the patio with my husband talking smack about our teenage children. After a hard day at work we would sip and swat mosquito's while I outlined my plan to sell them both for parts to finance our retirement in Belize.
Sadly, my therapeutic cocktail hours are over since alcohol encourages cancer cells to multiply. Protein is also on restriction with green vegetable and fruit juices taking a primary role in my diet. These are the negotiations I am having with my traitorous body: I stop having fun, you stay healthy and stop making mutant cells. Fair is fair.
Unfortunately my body is not ready to arbitrate and I have developed infections in both frankenboobies; cellulitis in one and an open hole in the other. Tomorrow I go back to the doctor with my husband and a packed bag, ready to be admitted. It might be necessary to install a drain or two, or we might have to remove the expanders all together. My hope is that he will debride and pack the draining hole and keep me on antibiotics since the cellulitis appears a little better and release us in time for a delicious dinner at P.F. Chang's but I know the chances of that are small.
I hate hospitals and regard them as flesh eating bacteria infused torture chambers. I am not far from wrong. The idea of spending more time there is freaking me out. The spectre of medical malfunction is popping out of the closet in my mind, MRSA is the monster under my bed.
Life is a tricky bastard and my body is its minion. Make me a Margarita and keep them coming.
Sadly, my therapeutic cocktail hours are over since alcohol encourages cancer cells to multiply. Protein is also on restriction with green vegetable and fruit juices taking a primary role in my diet. These are the negotiations I am having with my traitorous body: I stop having fun, you stay healthy and stop making mutant cells. Fair is fair.
Unfortunately my body is not ready to arbitrate and I have developed infections in both frankenboobies; cellulitis in one and an open hole in the other. Tomorrow I go back to the doctor with my husband and a packed bag, ready to be admitted. It might be necessary to install a drain or two, or we might have to remove the expanders all together. My hope is that he will debride and pack the draining hole and keep me on antibiotics since the cellulitis appears a little better and release us in time for a delicious dinner at P.F. Chang's but I know the chances of that are small.
I hate hospitals and regard them as flesh eating bacteria infused torture chambers. I am not far from wrong. The idea of spending more time there is freaking me out. The spectre of medical malfunction is popping out of the closet in my mind, MRSA is the monster under my bed.
Life is a tricky bastard and my body is its minion. Make me a Margarita and keep them coming.
Friday, May 27, 2011
Day 65 Fog
The drugs are messing with my head. I have spent whole days just sitting and watching vapid daytime television programs with no sense of how much time has really gone by, wasted. It's difficult to string thoughts together and my words get jumbled up and jambed like logs on a river. It's no longer strictly necessary for me to be on pain meds, so I have dropped them when not necessary. I have had to add in an antibiotic due to cellulitis in my left frankenboob and a new deadhesion in my right. I still take the laxative made necessary by the pain meds along with a stool softener and magnesium because things are not rolling quite the way they should be. I take meds for the swelling which is still a problem, and a muscle relaxer because that's the only way my expanders are bearable.
These drugs have made my mind foggy and dull and I can't wait to be rid of all of them. I want to drive my car to the barn, say hi to my friends and spend time forking up horse poo and untangling tails. I want to visit my horse and hear her nicker hello. I want to wrap my arms around her neck and breathe in her sweaty smells. I am far from riding, but a visit would be enough for now. My barrier is the fog and my weak, unsteady constitution.
I have been told that things get better from here, and I am looking forward to that more than I can express. In the future I will appreciate all of my days in the sun.
These drugs have made my mind foggy and dull and I can't wait to be rid of all of them. I want to drive my car to the barn, say hi to my friends and spend time forking up horse poo and untangling tails. I want to visit my horse and hear her nicker hello. I want to wrap my arms around her neck and breathe in her sweaty smells. I am far from riding, but a visit would be enough for now. My barrier is the fog and my weak, unsteady constitution.
I have been told that things get better from here, and I am looking forward to that more than I can express. In the future I will appreciate all of my days in the sun.
Monday, May 23, 2011
Day 61 Popping
My body looks like I caught shrapnel in battle and the medics have made hasty field dressings out of maxi pads taped to my chest. I laugh at the reflection in the mirror and my husband/medic looks up with a piece of tape dangling from his teeth anxious to see if this is a precursor to more sobbing.
We have been doing battle with the swelling in the site surrounding the expanders from hell. When my last drains were pulled the serous output in each was 25ccs in a 12 hour period. That was high in my opinion, Nurse Ratchet once told me I wouldn't lose my drains until output was 20ccs in a 24 hour period. My current output was borderline in my Doctor's opinion, but we were going to allow that swelling to create more expansion before it petered out. A classic Two-Birds-With-One-Stone gameplan. I did mention my nurse acquired knowledge, and was quickly told the number was 30ccs not 20 and that he felt OK about this. What could I say? Nothing could be worse than those drains anyway.
I was wrong about that. The swelling around the expanders went on and on. I was in terrible pain, my frankenboobies were distended, purple and hot to the touch. I immediately went back on drugs and straight to my recliner.
Two days after having my drains pulled I was changing clothes and was shocked to find one half of my camisole wet with warm pink fluid. I pulled the clinging fabric from my breast to find that I was draining from my recently pulled drain site and a small part of my mastectomy site which had become unstuck. My right frankenboobie had popped.
I called the doctor and he reassured me that this sometimes happens and many women use maxipads to absorb the flow. "Better out than in" he says, "keep taking your anti inflammatories and I'll see you Wednesday." two days later I was on my 10th maxipad and more comfortable due to the drainage when my left frankenboobie erupted through it's second drainage site.
As my husband expertly stops up my leakage with sanitary napkins affixed to my chest with trainer's tape. I want to say to him: "Don't look at me, I'm too ugly." I firmly believe that once you see something, you can't unsee it. That's why I don't watch horror movies, I don't want those images flavoring my thoughts. And here I am, mutilated, leaking, with maxipads taped all over my chest and I laugh "did you ever think we would be doing THIS?" I ask. "Never" he replied with tired eyes and a sweet smile "not in a million years." What I'm really asking is: are these images going to make us stronger, or eventually pull us apart? We are both in unfamiliar territory here. Will we survive this new environment? I am changing, you are changing, our roles are changing what will "We" be when this ride comes to a full and complete stop?
We have been doing battle with the swelling in the site surrounding the expanders from hell. When my last drains were pulled the serous output in each was 25ccs in a 12 hour period. That was high in my opinion, Nurse Ratchet once told me I wouldn't lose my drains until output was 20ccs in a 24 hour period. My current output was borderline in my Doctor's opinion, but we were going to allow that swelling to create more expansion before it petered out. A classic Two-Birds-With-One-Stone gameplan. I did mention my nurse acquired knowledge, and was quickly told the number was 30ccs not 20 and that he felt OK about this. What could I say? Nothing could be worse than those drains anyway.
I was wrong about that. The swelling around the expanders went on and on. I was in terrible pain, my frankenboobies were distended, purple and hot to the touch. I immediately went back on drugs and straight to my recliner.
Two days after having my drains pulled I was changing clothes and was shocked to find one half of my camisole wet with warm pink fluid. I pulled the clinging fabric from my breast to find that I was draining from my recently pulled drain site and a small part of my mastectomy site which had become unstuck. My right frankenboobie had popped.
I called the doctor and he reassured me that this sometimes happens and many women use maxipads to absorb the flow. "Better out than in" he says, "keep taking your anti inflammatories and I'll see you Wednesday." two days later I was on my 10th maxipad and more comfortable due to the drainage when my left frankenboobie erupted through it's second drainage site.
As my husband expertly stops up my leakage with sanitary napkins affixed to my chest with trainer's tape. I want to say to him: "Don't look at me, I'm too ugly." I firmly believe that once you see something, you can't unsee it. That's why I don't watch horror movies, I don't want those images flavoring my thoughts. And here I am, mutilated, leaking, with maxipads taped all over my chest and I laugh "did you ever think we would be doing THIS?" I ask. "Never" he replied with tired eyes and a sweet smile "not in a million years." What I'm really asking is: are these images going to make us stronger, or eventually pull us apart? We are both in unfamiliar territory here. Will we survive this new environment? I am changing, you are changing, our roles are changing what will "We" be when this ride comes to a full and complete stop?
Friday, May 20, 2011
Day 59 Howling
I have an issue with my plastic surgeon. He made it sound like expanders followed by a permanent silicone implant would be a piece of cake. We would gradually, conservatively add fluid and the result would be two hard lumps making space for the piece de resistance: beautiful, new boobies.
If I had it to do over again I would have used my own tissue. I have ended every day in tears this last week because I can do very little with my arms that doesn't cause my pectoralis muscles to spasm over these hard, saline filled, nodules-from-hell. My chest wall feels like fire. Every day of this week has found me stoned and flat on my back. Forget the risk of tissue necrosis, longer recovery and long surgical day, at least I wouldn't be looking at an entire summer strung out on Loritab and Flexoril.
I am two days out from my last expansion and having my remaining drains pulled. These drains were located nearest to the chest wall and were "borderline" in their collection of salmon colored serous fluid. The doctor tells me that the remaining fluid collecting around the expanders should be a good thing as it would help with my gradual expansion. He then filled my numb breasts with 50 ccs of saline and left the nurse to yank my drains.
I completely separated from my body as my nurse clipped the suture that held the drain to the inflamed site and then yanked. I heard a howl, but didn't register that it came from me until the grey cleared and I could again see the ceiling of the exam room. I had a better hold on reality for the next one, but I am not sure that's a good thing. Afterwards, I thanked the nurse through my tears because not to do so would be rude and, after all, my drains were now out and that is a wonderful thing. My husband says I went from spider to insect to human, never thought of it that way but it is a wonderful thing to FEEL human again.
By the time we arrived back home the pressure in my chest was agony and I went straight for the meds and another lovely afternoon on my back trying not to move or breathe. I have 250ccs in right now with 150 to go. One of my frankenboobies is bruised and purple due to the Expander vs. Muscle cage match that is currently being waged on my chest wall.
Today is a better day. I am two weeks out from surgery now, and I am told that I am doing great. This morning my husband picked me up so that I could attend my son's graduation from middle school. I saw him cross the stage and take his certificate and it occured to me that my time with him and his sister is so finite and precious. I hate this process all the more for looting my time with them.
If I had it to do over again I would have used my own tissue. I have ended every day in tears this last week because I can do very little with my arms that doesn't cause my pectoralis muscles to spasm over these hard, saline filled, nodules-from-hell. My chest wall feels like fire. Every day of this week has found me stoned and flat on my back. Forget the risk of tissue necrosis, longer recovery and long surgical day, at least I wouldn't be looking at an entire summer strung out on Loritab and Flexoril.
I am two days out from my last expansion and having my remaining drains pulled. These drains were located nearest to the chest wall and were "borderline" in their collection of salmon colored serous fluid. The doctor tells me that the remaining fluid collecting around the expanders should be a good thing as it would help with my gradual expansion. He then filled my numb breasts with 50 ccs of saline and left the nurse to yank my drains.
I completely separated from my body as my nurse clipped the suture that held the drain to the inflamed site and then yanked. I heard a howl, but didn't register that it came from me until the grey cleared and I could again see the ceiling of the exam room. I had a better hold on reality for the next one, but I am not sure that's a good thing. Afterwards, I thanked the nurse through my tears because not to do so would be rude and, after all, my drains were now out and that is a wonderful thing. My husband says I went from spider to insect to human, never thought of it that way but it is a wonderful thing to FEEL human again.
By the time we arrived back home the pressure in my chest was agony and I went straight for the meds and another lovely afternoon on my back trying not to move or breathe. I have 250ccs in right now with 150 to go. One of my frankenboobies is bruised and purple due to the Expander vs. Muscle cage match that is currently being waged on my chest wall.
Today is a better day. I am two weeks out from surgery now, and I am told that I am doing great. This morning my husband picked me up so that I could attend my son's graduation from middle school. I saw him cross the stage and take his certificate and it occured to me that my time with him and his sister is so finite and precious. I hate this process all the more for looting my time with them.
Thursday, May 12, 2011
Day 49 Road Trip
I took my post op trip to Birmingham yesterday to meet with my doctors. Sadly, I was really excited about going. You see, when you are recovering and confined to your room or your home nothing really happens to you. You are insulated from the worlds activities and are slowly written out of life. No longer in the flux and flow of living, you exist only to heal.
My children come home and tell me a little about their day. I ask leading questions to get the small details out of them. They are patient with me and try not to show their irritation with my detective work, but it's clear that they have things to do and are itching to get away. My darling husband arrives after that and fills me in on happenings at work. I have nothing to tell him that doesn't concern my meds, how I feel, or my level of pain. I am not fun to talk to.
I woke up at 5:00 a.m. eager to load up and get the hell out of Dodge, but travelling is not a spontaneous thing. I need my arm pillows, my drains emptied and stripped, my drain log updated and put in my travel file, my meds need to be placed in a travel case so I don't miss a dose, I need to dress in real clothing which is an ordeal and put on some makeup which I have to do like a Tyrannisaurus Rex because I can't lift my arms above my shoulders. Forget about my hair, blowdrying is out of the question so I have to go with the poodle look. I am on narcotics so none of this is easy and my lack of short term memory causes me to endlessly question my husband about our preparations. Kindle, reading glasses, check book, insurance card, ID, notepad for questions and note taking. It is nearly 7:00 by the time we prop me up in the passenger seat and embark on our epic journey.
We forgot to eat breakfast but after a drive thru at Chik fil a we were back on the road, arriving just in time for our first appointment.
All good news. I am recovering at a fast rate, my margins were clean, and my lymph nodes empty. I had undetected fibrocystic breast disease in my healthy breast, and more locations of invasive cancer in my other breast than was detected through the imaging process. Happily those locations were small and didn't add much to my 2 cm initial measurement. My breast surgeon is sending my carcinoma to California for oncotyping, after which I will acquire my own personal ONCOLOGIST! I can't wait.
My reconstructive surgeon took out two of my four drains which felt like my heart was being ripped out of my armpit. My Tegaderm (sp?) dressing was removed and I saw and felt the uncovered sutures and freaked out. I made him retape over the sutures. Seeing them is unexpectedly traumatic to me and so is the fact that I have absolutely no feeling in my breasts, they are a blank spot in my body. I lost it.
We came home and I went to bed. I want to wake up refreshed and ready for my new reality.
My children come home and tell me a little about their day. I ask leading questions to get the small details out of them. They are patient with me and try not to show their irritation with my detective work, but it's clear that they have things to do and are itching to get away. My darling husband arrives after that and fills me in on happenings at work. I have nothing to tell him that doesn't concern my meds, how I feel, or my level of pain. I am not fun to talk to.
I woke up at 5:00 a.m. eager to load up and get the hell out of Dodge, but travelling is not a spontaneous thing. I need my arm pillows, my drains emptied and stripped, my drain log updated and put in my travel file, my meds need to be placed in a travel case so I don't miss a dose, I need to dress in real clothing which is an ordeal and put on some makeup which I have to do like a Tyrannisaurus Rex because I can't lift my arms above my shoulders. Forget about my hair, blowdrying is out of the question so I have to go with the poodle look. I am on narcotics so none of this is easy and my lack of short term memory causes me to endlessly question my husband about our preparations. Kindle, reading glasses, check book, insurance card, ID, notepad for questions and note taking. It is nearly 7:00 by the time we prop me up in the passenger seat and embark on our epic journey.
We forgot to eat breakfast but after a drive thru at Chik fil a we were back on the road, arriving just in time for our first appointment.
All good news. I am recovering at a fast rate, my margins were clean, and my lymph nodes empty. I had undetected fibrocystic breast disease in my healthy breast, and more locations of invasive cancer in my other breast than was detected through the imaging process. Happily those locations were small and didn't add much to my 2 cm initial measurement. My breast surgeon is sending my carcinoma to California for oncotyping, after which I will acquire my own personal ONCOLOGIST! I can't wait.
My reconstructive surgeon took out two of my four drains which felt like my heart was being ripped out of my armpit. My Tegaderm (sp?) dressing was removed and I saw and felt the uncovered sutures and freaked out. I made him retape over the sutures. Seeing them is unexpectedly traumatic to me and so is the fact that I have absolutely no feeling in my breasts, they are a blank spot in my body. I lost it.
We came home and I went to bed. I want to wake up refreshed and ready for my new reality.
Tuesday, May 10, 2011
Day 42 I Am Healed
A nurse came through the curtain with a clinking bag of sterile supplies and asked me the same question everyone has asked me since I arrived: " How are you?" I answered the way most people want me to: "I'm fine." I wiped the wetness off of my cheeks and put on my "brave" face. Usually that's enough to make most people disappear back to the other side of the curtain, but not this woman. "You cry if you want to, feel down if you that's how you feel. You can't stop those feelings, just let them out. You are going to be OK. I know because I've been there myself. Then she asked me: "Are you a believer?" I answered "Yes, I believe in G.d." She wasted no time in gathering me up tightly in her arms and she started praying over me. She prayed for me, she prayed for my health, she prayed for my husband and asked the Lord to give him strength. She petitioned G.d with a strong almost ferocious voice as she made her belief manifest, and then she asked me to state what G.d has already done for me, she asked for a statement of faith. I answered "I am healed." "And so it is." says she. Those strong loving arms loosened, she stood up and left. I was weeping and my husband was crying, but they were tears of relief. I had staked my claim on a full recovery, and I was no longer afraid.
Very soon after that I got my shot of Versed and began my trip to the OR, I remember nothing for the next 5 hours.
I woke in searing pain. "Wake up now, you are in the recovery room, the surgery is over." I couldn't open my eyes for the life of me. The nurses were talking about people they don't like, where they had dinner last night, talking to each other like two High School girls, incessantly and with complete absorption in each other. I felt like someone who didn't belong in their clique. I took a difficult breath and said through my raw throat: "pain." My nurse answered back "we'll get you something soon." and went back to her real job, which is to speak to the other nurses about their personal business. "Pain." She ignored me, I am guessing that transitioning people out of surgery must be very boring for her, we must be so tiresome with our catheters and requests for pain medication. Just demanding shapes under warming blankets asking for stuff.
Eventually I was handed a button I could press every 6 minutes for pain and was rolled to my room. That button was my best friend. My mother-in-law told me when the allotted time had passed and I pushed that button like a cat jumps on a bird. Morphine is my friend, I forget all about the teenagers in recovery, my world is that button in my right hand. All my strength and attention is on crawling out of this crater of agony.
Eventually I am the victor. My pain is managed and all I feel now is relief. This part is over, I never have to do this again, the margins are clean, we must wait for the sentinel node biopsy to come back next week. I am optimistic, because I already claimed my healing. Amen.
Very soon after that I got my shot of Versed and began my trip to the OR, I remember nothing for the next 5 hours.
I woke in searing pain. "Wake up now, you are in the recovery room, the surgery is over." I couldn't open my eyes for the life of me. The nurses were talking about people they don't like, where they had dinner last night, talking to each other like two High School girls, incessantly and with complete absorption in each other. I felt like someone who didn't belong in their clique. I took a difficult breath and said through my raw throat: "pain." My nurse answered back "we'll get you something soon." and went back to her real job, which is to speak to the other nurses about their personal business. "Pain." She ignored me, I am guessing that transitioning people out of surgery must be very boring for her, we must be so tiresome with our catheters and requests for pain medication. Just demanding shapes under warming blankets asking for stuff.
Eventually I was handed a button I could press every 6 minutes for pain and was rolled to my room. That button was my best friend. My mother-in-law told me when the allotted time had passed and I pushed that button like a cat jumps on a bird. Morphine is my friend, I forget all about the teenagers in recovery, my world is that button in my right hand. All my strength and attention is on crawling out of this crater of agony.
Eventually I am the victor. My pain is managed and all I feel now is relief. This part is over, I never have to do this again, the margins are clean, we must wait for the sentinel node biopsy to come back next week. I am optimistic, because I already claimed my healing. Amen.
Wednesday, May 4, 2011
Day 41 Supergirl
I really haven't known what to write over the last few days. Not that there hasn't been enough to write about, friends, my precious riders, volunteers, family, phone calls, messages, work, my lame horse, my lame back and presurgical preparations; there has been tons to write about, but my brain is too frazzled to hold down a thought. When I sit down to write I end up staring into space watching my thoughts burn by me like asteroids. Occasionally one will hit me and leave a dent, but it's never enough to knock me out of my orbit. The planet I orbit? Planet Thursday.
Tomorrow I will walk into surgery. After that Planet Thursday will be a memory and I will be free to think real thoughts and make plans. I will deal with the pain and rehabilitation, I do that pretty well. Pain and strength building are old friends of mine and I will greet them with a strong handshake. We will know how far the cancer has progressed. This has been the big mystery of my life in these past days, but Thursday will answer that sixty-four-thousand-dollar-question and I will march forward on whichever path cancer designates.
I will turn my head a look back at the shards of Planet Thursday and hurtle towards the earth. Like Supergirl.
Thanks to everyone for their conveyed strength, prayers and encouragement, I will blog again as soon as possible...my next entry may be a little drug addled though.
Tomorrow I will walk into surgery. After that Planet Thursday will be a memory and I will be free to think real thoughts and make plans. I will deal with the pain and rehabilitation, I do that pretty well. Pain and strength building are old friends of mine and I will greet them with a strong handshake. We will know how far the cancer has progressed. This has been the big mystery of my life in these past days, but Thursday will answer that sixty-four-thousand-dollar-question and I will march forward on whichever path cancer designates.
I will turn my head a look back at the shards of Planet Thursday and hurtle towards the earth. Like Supergirl.
Thanks to everyone for their conveyed strength, prayers and encouragement, I will blog again as soon as possible...my next entry may be a little drug addled though.
Saturday, April 30, 2011
Day I don't know
I have been handing off my classes for the past week. Bringing in a new teacher, introducing them to my students and showing the instructor what we are up to in class. Next week I will walk out the door, leaving them in someone elses hands. My progress notes are up to date so they can be referred to in my absence. Our first annual fundraising trail ride is on track, volunteers and raffle items are in place. There are 3.5 weeks left in the session after I leave, mission accomplished.
This weekend I will try to tie up the loose ends at home. We will install a dog door, a small one so my 15 week old Miniature Blue Heeler Fanny can come in and out but the larger dogs remain outside except when intentionally admitted. This will cut down on the mess and the chaos. My large German Shepherd/Irish Wolfhound X is scheduled to be shaved on Monday to assure his comfort in the heat. Fanny's new Invisible Fence receiver is in the mail and should arrive any day...she's going to hate this, but it will keep her from herding the increasingly angry walkers in the neighborhood. Puppy or no, she knows her job and those walkers will keep moving.
Post surgical camisole are ordered and will be delivered to our office on the day of my surgery. Just in time for me to return. My post surgical wardrobe is determined: camisole, drawstring pajama bottoms with pockets (for my cellphone), one of my husband's button front shirts (sized XXL, I'm hoping the look is endearingly adorable, not ridiculous.)
Bought a camera that my husband can use to record this journey. I can count the number of photographs he has taken of me, or taken period on one hand. If I was hit by a truck tomorrow there would be almost no photographic evidence of my existance. What makes me think he will do this? If he does then that's incontravertable evidence that Cancer changes everything.
The first week of my recovery will be at my wonderful, generous In-Law's home. This will allow my husband to work during the day and possibly sleep at night. I am unsure about this since I will be on less than my best behavior during my recovery. Adjectives such as: crusty, anxious, and downright mean would be appropriate to describe me NOW...what am I going to be like post surgery?
There is hushed talk of hiring a day nurse for the first week, hushed because I don't think I will need it, and the idea that I will makes me angry. My husband does not want to confront me on this, he's doing it "behind my back." I am letting him because there is no arguing with him on this point, he won't discuss it and is treating me like a child who doesn't know what she needs. I have resolved that he and my in laws are doing it out of love for me and I am trying not to fight against it. I hope she has a sense of humor or, if it's a man, he's ruggedly good looking.
I have enrolled my mare in another month of training, and my dear friend has also agreed to keep my puppy for the first week of my recovery. This might be the end of our friendship since this hardheaded dog will completely dominate her household and is imperfectly housetrained.
My sister in law is managing the meal delivery through an amazing website that organizes that sort of thing. I can't imagine this being less than overwhelming and I am so grateful to her for her generosity and grace as well as the gift of those lining up with their loving meals.
I have a stack of notes and charitable gifts that I have to acknowledge, plus the meals already being promised. My personalized notecards should be delivered next week. I hope 50 is enough, it was all I could afford at that moment. Maybe I should have ordered 100 just to be safe. Why was it important for them to be personalized?
Food in the fridge is dwindling, I am on track to clean it out on Tuesday. Joy.
No Kindle yet...carpets need cleaning but I think it will be OK. I am so ready for this to be over and be looking at this from the other side where I can regain some perspective so small things don't look large and normal things don't look huge and my "to-do" list doesn't seem so important.
This weekend I will try to tie up the loose ends at home. We will install a dog door, a small one so my 15 week old Miniature Blue Heeler Fanny can come in and out but the larger dogs remain outside except when intentionally admitted. This will cut down on the mess and the chaos. My large German Shepherd/Irish Wolfhound X is scheduled to be shaved on Monday to assure his comfort in the heat. Fanny's new Invisible Fence receiver is in the mail and should arrive any day...she's going to hate this, but it will keep her from herding the increasingly angry walkers in the neighborhood. Puppy or no, she knows her job and those walkers will keep moving.
Post surgical camisole are ordered and will be delivered to our office on the day of my surgery. Just in time for me to return. My post surgical wardrobe is determined: camisole, drawstring pajama bottoms with pockets (for my cellphone), one of my husband's button front shirts (sized XXL, I'm hoping the look is endearingly adorable, not ridiculous.)
Bought a camera that my husband can use to record this journey. I can count the number of photographs he has taken of me, or taken period on one hand. If I was hit by a truck tomorrow there would be almost no photographic evidence of my existance. What makes me think he will do this? If he does then that's incontravertable evidence that Cancer changes everything.
The first week of my recovery will be at my wonderful, generous In-Law's home. This will allow my husband to work during the day and possibly sleep at night. I am unsure about this since I will be on less than my best behavior during my recovery. Adjectives such as: crusty, anxious, and downright mean would be appropriate to describe me NOW...what am I going to be like post surgery?
There is hushed talk of hiring a day nurse for the first week, hushed because I don't think I will need it, and the idea that I will makes me angry. My husband does not want to confront me on this, he's doing it "behind my back." I am letting him because there is no arguing with him on this point, he won't discuss it and is treating me like a child who doesn't know what she needs. I have resolved that he and my in laws are doing it out of love for me and I am trying not to fight against it. I hope she has a sense of humor or, if it's a man, he's ruggedly good looking.
I have enrolled my mare in another month of training, and my dear friend has also agreed to keep my puppy for the first week of my recovery. This might be the end of our friendship since this hardheaded dog will completely dominate her household and is imperfectly housetrained.
My sister in law is managing the meal delivery through an amazing website that organizes that sort of thing. I can't imagine this being less than overwhelming and I am so grateful to her for her generosity and grace as well as the gift of those lining up with their loving meals.
I have a stack of notes and charitable gifts that I have to acknowledge, plus the meals already being promised. My personalized notecards should be delivered next week. I hope 50 is enough, it was all I could afford at that moment. Maybe I should have ordered 100 just to be safe. Why was it important for them to be personalized?
Food in the fridge is dwindling, I am on track to clean it out on Tuesday. Joy.
No Kindle yet...carpets need cleaning but I think it will be OK. I am so ready for this to be over and be looking at this from the other side where I can regain some perspective so small things don't look large and normal things don't look huge and my "to-do" list doesn't seem so important.
Thursday, April 21, 2011
Day 27 Pitching
May 5th. That's the morning of my surgery. I found out two days ago, but haven't been able to write about it. Today I received the presurgical packet from the reconstructive surgeon and it was full disclosure heavy, very intimidating stuff. I have to sign every page, there are 7 of them and each one basically says "this might not work or worse." I am still waiting on the breast surgeon's package, that should be a kick.
I told the girls at work about my date and we started hammering down teachers to cover my classes. Already they are coming in to shadow me, each one is a relentless reminder that my presurgical days are ticking away and the searing pain of having my breasts cut away is hurtling at me like a fastball pitch.
This is such an edgy time for me, I am snappy and dangerous to be around. Yesterday I missed a baseball game with my family. Though I am not a big baseball fan, hot dogs and beer in the moist, simmering southern evening is such a treat. We are lucky enough to have a local farm team for the Devilrays and games are big fun. Through our friends, my son was awarded the last minute honor of throwing out the first pitch and because of work I was going to miss it. I pitched a fit and refused to go to the game at all. I stayed at home and ate scrambled eggs while everyone else partied their socks off. Childish.
My anxiety is also making it difficult to ride. Today I got a lesson on my wonderful green mare who is under training with my friend. We trotted, she rushed, I tightened and wasn't easy on her mouth, my hip angle kept closing, I sat too hard, my weight wasn't balanced, when I asked for the stop I clenched with my legs and butt. All wrong, I just couldn't get through the anxiety, the ever present feeling that I am going to die kept surfacing. Realistically, I know I am saving my life, not dying but fear is irrational and so am I right now.
I told the girls at work about my date and we started hammering down teachers to cover my classes. Already they are coming in to shadow me, each one is a relentless reminder that my presurgical days are ticking away and the searing pain of having my breasts cut away is hurtling at me like a fastball pitch.
This is such an edgy time for me, I am snappy and dangerous to be around. Yesterday I missed a baseball game with my family. Though I am not a big baseball fan, hot dogs and beer in the moist, simmering southern evening is such a treat. We are lucky enough to have a local farm team for the Devilrays and games are big fun. Through our friends, my son was awarded the last minute honor of throwing out the first pitch and because of work I was going to miss it. I pitched a fit and refused to go to the game at all. I stayed at home and ate scrambled eggs while everyone else partied their socks off. Childish.
My anxiety is also making it difficult to ride. Today I got a lesson on my wonderful green mare who is under training with my friend. We trotted, she rushed, I tightened and wasn't easy on her mouth, my hip angle kept closing, I sat too hard, my weight wasn't balanced, when I asked for the stop I clenched with my legs and butt. All wrong, I just couldn't get through the anxiety, the ever present feeling that I am going to die kept surfacing. Realistically, I know I am saving my life, not dying but fear is irrational and so am I right now.
Tuesday, April 19, 2011
Day 25 Artists, Surgeons and Strangers
Saturday I went to the wedding of someone I did not know. Of course they knew my husband, but since it was through work I was not aquainted. A second joining, their wedding party was exclusively the children and stepchildren. Everyone lit a unity candle and it was lovely, very symbolic. If the best intentions make for a good outcome they should be OK.
I hate these things and I love these things; the idealized lovestory part of them makes me feel a little lacking. I never had a big wedding with a poufy dress and veil, instead I opted for the small intimate wedding with few guests and a great deal of personal meaning. This was my choice entirely. Still, when I see the vision of perfection marching down the aisle to her properly dumbstruck-with-wonder groom I feel I might have missed something. This one of the hazards of the road less travelled. When faced with a fork in life the one with the most overgrowth and fewest footsteps is usually the one I choose.
Often people I know make me more nervous than people I don't know. I like having the latitude to speak to people who have few preconceived notions about me and about whom I know nothing. It's great fun to get to know a stranger for just a little while at a wedding, or a bar, or any kind of affair. I like the whole confessor scene that plays out: they don't know you, you don't know them and together you exchange all sorts of secrets and information that you might never exchange with someone you actually knew. Mostly you walk away and never see that person again, passionate intercourse with no ties...naughty.
I met a gifted musician, a pianist who has backed up Elton John and others. He was fascinating and very OCD. We spoke about art, music and books. He is also a Physician's Assistant in surgery, ironically he specializes in the type of surgeries I am about to have. Without prompting he recommended the reconstructive surgeon I had chosen just that morning to do my new boobies. He says this surgeon is one of the best in the country and he would choose no other. I am having these full circle moments more and more often now, they delight and terrify me.
Before he returned to the piano which he played as a favor to his newly married friends, he asked for my favorite Elton John song so that he could play it for me. I hesitated to tell him it is Levon, from Madman Across the Water. We agreed that it is a wonderful, dark, complicated song and NOT wedding material. He returned to his set, sang Your Song. He sang it for me:
I hate these things and I love these things; the idealized lovestory part of them makes me feel a little lacking. I never had a big wedding with a poufy dress and veil, instead I opted for the small intimate wedding with few guests and a great deal of personal meaning. This was my choice entirely. Still, when I see the vision of perfection marching down the aisle to her properly dumbstruck-with-wonder groom I feel I might have missed something. This one of the hazards of the road less travelled. When faced with a fork in life the one with the most overgrowth and fewest footsteps is usually the one I choose.
Often people I know make me more nervous than people I don't know. I like having the latitude to speak to people who have few preconceived notions about me and about whom I know nothing. It's great fun to get to know a stranger for just a little while at a wedding, or a bar, or any kind of affair. I like the whole confessor scene that plays out: they don't know you, you don't know them and together you exchange all sorts of secrets and information that you might never exchange with someone you actually knew. Mostly you walk away and never see that person again, passionate intercourse with no ties...naughty.
I met a gifted musician, a pianist who has backed up Elton John and others. He was fascinating and very OCD. We spoke about art, music and books. He is also a Physician's Assistant in surgery, ironically he specializes in the type of surgeries I am about to have. Without prompting he recommended the reconstructive surgeon I had chosen just that morning to do my new boobies. He says this surgeon is one of the best in the country and he would choose no other. I am having these full circle moments more and more often now, they delight and terrify me.
Before he returned to the piano which he played as a favor to his newly married friends, he asked for my favorite Elton John song so that he could play it for me. I hesitated to tell him it is Levon, from Madman Across the Water. We agreed that it is a wonderful, dark, complicated song and NOT wedding material. He returned to his set, sang Your Song. He sang it for me:
If I was a sculptor, but then again, no
Or a man who makes potions in a travelling show
I know it's not much but it's the best I can do
My gift is my song and this one's for you
Or a man who makes potions in a travelling show
I know it's not much but it's the best I can do
My gift is my song and this one's for you
And you can tell everybody this is your song
It may be quite simple but now that it's done
I hope you don't mind
I hope you don't mind that I put down in words
How wonderful life is while you're in the world
It may be quite simple but now that it's done
I hope you don't mind
I hope you don't mind that I put down in words
How wonderful life is while you're in the world
Sunday, April 17, 2011
Day 20 Through the Looking Glass
I am drinking 3 whey casein protein shakes a day, have quit drinking alcohol, and am eating fruit, vegetables and lean protein meals. That's when I am hungry enough to eat a meal as the shakes are very filling. The theory is that I am giving my body what it needs to build strong healthy cells, epithelial, and muscle tissues. This will enable me to heal well and fight infection effectively. It takes a concerted effort to make a protein shake that I can stomach and then proceed to stomach said shake. It is taking up alot of time and effort and I hate those shakes, they are not nearly as comforting as a glass of red wine and a steak. Sigh.
My days of eating what I wish are over. Now I eat to live and nourish a healthy body and immune system. I do not eat what cancer craves.
I also own two brand new recliners. Given my new healthy eating plan I find this silly and it illustrates my wacky new life.
I shop online for camisoles with concealed pockets for drains and fake booby pillows to simulate a normal shape. They are so expensive I have to file insurance to afford them. So much for my miserly TJ Maxx pricing standards.
My husband did the ironing today. Nothing makes sense anymore.
My days of eating what I wish are over. Now I eat to live and nourish a healthy body and immune system. I do not eat what cancer craves.
I also own two brand new recliners. Given my new healthy eating plan I find this silly and it illustrates my wacky new life.
I shop online for camisoles with concealed pockets for drains and fake booby pillows to simulate a normal shape. They are so expensive I have to file insurance to afford them. So much for my miserly TJ Maxx pricing standards.
My husband did the ironing today. Nothing makes sense anymore.
Tuesday, April 12, 2011
Day 18 Justice
When the surgeon asked me: "Why do you want the Diep Flap procedure?" I said "Justice." This was my idea of a give and take negotiation with my cancer, a deal with my devil so to speak. You take my breasts and I can take all of this unwelcome fat around my middle and move it up. Justice.
It took a lot for me to surrender to the tissue expanders. My surgeon had to go into all of the stuff that I knew but had depressed. Tissue death being the major here, followed by radiation damage. She told me she crys when the Tram and Diep Flap patients have to undergo the radiation which shrinks the breast. A donor tissue breast cannot be rebuilt, ever. Implants can be redone if needed. Lots of stuff can kill your donor tissue, the procedure is very long, anethesia is high risk. Recovery takes months, not weeks.
Heavy sigh. I was looking at this like my silver lining and I am shocked by how disappointed I am. I hate my tummy and it is never going away. I love my breasts and they are. I cry half way home while my husband holds my wet, snotty hand.
Sometimes that is what you need to turn yourself around, a rollicking pity party with just you and your dearest friend. After I was finished being weepy I looked at what I did have: Healthy children, a loving husband, a job I love (not to mention a job in this economy,) my husband has a steady job, we have two cars in good repair, my fridge is full of food, my in-laws are always right there if I need help, I am surrounded with people and animals who love me, I have a roof over my head, my insurance is good AND I bought cancer insurance several years back. I will continue to have all of that along with pretty implants and a tummy, I will be zaftig. That's Yiddish for round, curvy, or literally "juicy." And, because of Cancer I will from now on, know that I have more than enough.
Justice.
It took a lot for me to surrender to the tissue expanders. My surgeon had to go into all of the stuff that I knew but had depressed. Tissue death being the major here, followed by radiation damage. She told me she crys when the Tram and Diep Flap patients have to undergo the radiation which shrinks the breast. A donor tissue breast cannot be rebuilt, ever. Implants can be redone if needed. Lots of stuff can kill your donor tissue, the procedure is very long, anethesia is high risk. Recovery takes months, not weeks.
Heavy sigh. I was looking at this like my silver lining and I am shocked by how disappointed I am. I hate my tummy and it is never going away. I love my breasts and they are. I cry half way home while my husband holds my wet, snotty hand.
Sometimes that is what you need to turn yourself around, a rollicking pity party with just you and your dearest friend. After I was finished being weepy I looked at what I did have: Healthy children, a loving husband, a job I love (not to mention a job in this economy,) my husband has a steady job, we have two cars in good repair, my fridge is full of food, my in-laws are always right there if I need help, I am surrounded with people and animals who love me, I have a roof over my head, my insurance is good AND I bought cancer insurance several years back. I will continue to have all of that along with pretty implants and a tummy, I will be zaftig. That's Yiddish for round, curvy, or literally "juicy." And, because of Cancer I will from now on, know that I have more than enough.
Justice.
Monday, April 11, 2011
Day 17 So Says The Surgeon Part II
Woke at 5:30 a.m. in preparation to see the surgeon in Birmingham. This one was recommended by one of our relatives who happens to be a reconstructive surgeon. He operates with her and says that She is the one He would send his wife to if she was ever in my position.
She was younger than I by about 9 years, but I guess that stuff happens when you get older. She was very straightforward and to the point. She recommends the double mastectomy, no tram flap or diep flap. The sequelae is too risky and the tissue would be destroyed if I happened to need radiation, which is a distinct possibility. She sees tissue expanders and implants following to be the most expedient and least risky reconstruction option. After her lengthy and patient explanation I am seeing the light on this issue.
Let's face it, she's a woman and I have to assume she has placed herself in this position at least as many times as she has had patients. She has seen the results of all her treatment options from a female perspective. I appreciate that. I also appreciate her bedside, or table side, manner and intelligence. We did not discuss as much as debate and she was on her game the whole time. I forgot to ask about her preferred pain management protocols, but I will fire her an email later.
She will give me until the beginning of May to have my surgery. A blessing since I have so much to do at work and at home. I don't know if I can do it all before the surgical date.
Ambien has been great. Only the last two nights I have woken at 2:00 and not been able to get back to sleep. Of course I have been taking only 1/2 a tablet. Tonight I will take a whole dose. NEVER considered that I would take sleep medication, not in my life. How things change.
She was younger than I by about 9 years, but I guess that stuff happens when you get older. She was very straightforward and to the point. She recommends the double mastectomy, no tram flap or diep flap. The sequelae is too risky and the tissue would be destroyed if I happened to need radiation, which is a distinct possibility. She sees tissue expanders and implants following to be the most expedient and least risky reconstruction option. After her lengthy and patient explanation I am seeing the light on this issue.
Let's face it, she's a woman and I have to assume she has placed herself in this position at least as many times as she has had patients. She has seen the results of all her treatment options from a female perspective. I appreciate that. I also appreciate her bedside, or table side, manner and intelligence. We did not discuss as much as debate and she was on her game the whole time. I forgot to ask about her preferred pain management protocols, but I will fire her an email later.
She will give me until the beginning of May to have my surgery. A blessing since I have so much to do at work and at home. I don't know if I can do it all before the surgical date.
Ambien has been great. Only the last two nights I have woken at 2:00 and not been able to get back to sleep. Of course I have been taking only 1/2 a tablet. Tonight I will take a whole dose. NEVER considered that I would take sleep medication, not in my life. How things change.
Saturday, April 9, 2011
Day 15 The Fog
When normality settles around you it's very much like fog. You have trouble seeing at a distance,and your senses are muffled to what is immediately outside of your sight. It makes the reality of the world less real, you are fooled for a short time. Blinded sailors find themselves impaled on rocks, pilots descend when they should pull up.
Normality is not my friend. It fools me into thinking that I'm OK and have nothing to worry about. The fog clears and I have to readjust to my reality and it's such a harsh blow. I go from normal to devastated and back to normal again.
My new friend sent me a journal entry about a mammogram that she had. Happily it was normal but, while she waited for her results she had a glimpse into what might be. She looked deeply into the unity she shared with her breasts. Their role in nurturing, alluring, and loving; the feelings that they absorbed and evoked. This was a nakedly honest moment and I am glad she wrote it down and shared it with me. Her writing moved me to tears.
My new normal will be breasts without sensation, they will never be alive with feeling and there is so much feeling in a woman's breasts. We rarely think about it but, when the fog lifts I do.
Normality is not my friend. It fools me into thinking that I'm OK and have nothing to worry about. The fog clears and I have to readjust to my reality and it's such a harsh blow. I go from normal to devastated and back to normal again.
My new friend sent me a journal entry about a mammogram that she had. Happily it was normal but, while she waited for her results she had a glimpse into what might be. She looked deeply into the unity she shared with her breasts. Their role in nurturing, alluring, and loving; the feelings that they absorbed and evoked. This was a nakedly honest moment and I am glad she wrote it down and shared it with me. Her writing moved me to tears.
My new normal will be breasts without sensation, they will never be alive with feeling and there is so much feeling in a woman's breasts. We rarely think about it but, when the fog lifts I do.
Friday, April 8, 2011
Day 14 Ambien To The Rescue
Today I got my Ambien. I had to pull the cancer card on the call nurse, lucky for me cancer trumps office procedure and they called in my prescription. This will probably be the last time cancer saves me time and money and I am relishing it.
This will potentially be an entire night without crying, nightmares that wake me, wakemares that make night endless. No thoughts of being maimed, infected, thrombosed or dead. Just sleep. Ambien, you are my hero.
Let it begin.
This will potentially be an entire night without crying, nightmares that wake me, wakemares that make night endless. No thoughts of being maimed, infected, thrombosed or dead. Just sleep. Ambien, you are my hero.
Let it begin.
Thursday, April 7, 2011
Day 13 So Says The Surgeon - part I
Invasive lobular carcinoma
Nottingham grade: 2
Lymphatic vascular invasion: Absent
LCIS component: Present, moderate
ER: 92
PR: 95
Her2/neu: 1+
There's good news in there. See the ER and PR? Those are the measurements for Estrogen and Progesterone receptivity and they are very high. High enough that this surgeon thinks I may dodge the chemotherapy bullet and instead go the Tamoxophin all the way...that's if the margins are clean and the sentinal node biopsy is clear.
More I think than the mastectomy (which I dread), I am fearful of the lingering sickness of chemo and the stress that would place on everyone INCLUDING me. I do not enjoy being sick. Lest you think that's an overly obvious statement, let me say I know people who relish being sick. Being cared for and maybe pitied satisfies many of their needs. I am the opposite and probably equally twisted.
I have a pathological need to be independent. My husband loves doing things for me, but I have to will myself to let him. Being dependent, even on my most trusted partner, feels dangerous to me. I would do almost anything not to be sick. My recovery is going to require me to change big time.
The surgeon told me that I had to option to do a single mastectomy and that he recommends this. I see this as a typical Male response. The fact is, this type of carcinoma is known to reappear in the opposite breast in later years. Not a 100% chance by any means, but you have to keep a close watch on it. Who out there would willingly go this route again and, in the meantime, have to look at their remaining breast as a potential assassin? That's bullshit if you will forgive my barn talk. Plus, having two breasts that are different densities might unbalance me in the saddle, not to mention that one would age and the other would stay the same. Take them now, rebuild me, let me proceed balanced and perky.
I will have my second opinion Monday in Birmingham. This time with a female breast surgeon...let's see what SHE says.
Nottingham grade: 2
Lymphatic vascular invasion: Absent
LCIS component: Present, moderate
ER: 92
PR: 95
Her2/neu: 1+
There's good news in there. See the ER and PR? Those are the measurements for Estrogen and Progesterone receptivity and they are very high. High enough that this surgeon thinks I may dodge the chemotherapy bullet and instead go the Tamoxophin all the way...that's if the margins are clean and the sentinal node biopsy is clear.
More I think than the mastectomy (which I dread), I am fearful of the lingering sickness of chemo and the stress that would place on everyone INCLUDING me. I do not enjoy being sick. Lest you think that's an overly obvious statement, let me say I know people who relish being sick. Being cared for and maybe pitied satisfies many of their needs. I am the opposite and probably equally twisted.
I have a pathological need to be independent. My husband loves doing things for me, but I have to will myself to let him. Being dependent, even on my most trusted partner, feels dangerous to me. I would do almost anything not to be sick. My recovery is going to require me to change big time.
The surgeon told me that I had to option to do a single mastectomy and that he recommends this. I see this as a typical Male response. The fact is, this type of carcinoma is known to reappear in the opposite breast in later years. Not a 100% chance by any means, but you have to keep a close watch on it. Who out there would willingly go this route again and, in the meantime, have to look at their remaining breast as a potential assassin? That's bullshit if you will forgive my barn talk. Plus, having two breasts that are different densities might unbalance me in the saddle, not to mention that one would age and the other would stay the same. Take them now, rebuild me, let me proceed balanced and perky.
I will have my second opinion Monday in Birmingham. This time with a female breast surgeon...let's see what SHE says.
Monday, April 4, 2011
Day 12
The storm is rolling in. If you watch the local weather it should be apocalyptic, they are running the Fear Of God Doppler weather radar nonstop and the warning boxes keep popping up. Every two minutes the television emits a beeping, warning us that the end is near. I can hear it in the distance and it is thundering nonstop. It was 87 degrees today with 35 mph wind gusts, ominous. Tornado weather.
This is a normal Spring and early Summer event here in the Deep South. We have had a relatively easy severe weather season, so we are due for a blow. I hope it won't be bad.
We began our Spring Session at our facility today and I got to meet our new crop of students. Some new to the facility and some new to me, some known and long beloved. They are precious. I am so glad to be back at work. This is the best place for me. In spite of the fact that I haven't slept in 12 days (an hour here and there doesn't count) I felt an energy imbue me and a bright bubble surround me. I hugged my hero horse. From now on he will be referred to as Dallas The Diagnosticator. I mounted and rode for the first time since my diagnosis. Just a walk around the arena, but that wasn't the point. That ride put me back in the saddle again, so to speak.
Tomorrow I have my first consultation with a breast surgeon. We will discuss my prognosticators, and my procedure options, we will hash out recovery scenarios. After I will run to work, hopefully in time to cover my first class of the day. Post work I will meet one of my girlfriends for a martini and a salad, and hopefully some laughs. I guess it depends on what the Doctor says.
The storm is racing in now, just a short distance away and I am counting the seconds between the lightning and the thunder.
This is a normal Spring and early Summer event here in the Deep South. We have had a relatively easy severe weather season, so we are due for a blow. I hope it won't be bad.
We began our Spring Session at our facility today and I got to meet our new crop of students. Some new to the facility and some new to me, some known and long beloved. They are precious. I am so glad to be back at work. This is the best place for me. In spite of the fact that I haven't slept in 12 days (an hour here and there doesn't count) I felt an energy imbue me and a bright bubble surround me. I hugged my hero horse. From now on he will be referred to as Dallas The Diagnosticator. I mounted and rode for the first time since my diagnosis. Just a walk around the arena, but that wasn't the point. That ride put me back in the saddle again, so to speak.
Tomorrow I have my first consultation with a breast surgeon. We will discuss my prognosticators, and my procedure options, we will hash out recovery scenarios. After I will run to work, hopefully in time to cover my first class of the day. Post work I will meet one of my girlfriends for a martini and a salad, and hopefully some laughs. I guess it depends on what the Doctor says.
The storm is racing in now, just a short distance away and I am counting the seconds between the lightning and the thunder.
Sunday, April 3, 2011
Day 11 Three Pink Watches and a Scarf
Last Summer I had the most overwhelming pleasure of hosting my dear friend's son for a month. They live in Yorkshire and are "horsey" folk, his intention was to work at our therapeutic riding facility while beefing up his university resume by doing so overseas. We had the best time firing off fireworks on the 4th of July, going to Hooters so that he could charm the servers with his British accent, sitting around and playing video games with all of the neighborhood boys, training horses and laughing. Mostly laughing. I think I lost two inches from my waist from all of the hooting and cackling that we did together. When he left, I cried. I didn't say goodbye to him, I just made him promise to come back.
The apple doesn't fall far from the tree, his whole family is really great. Fun, free spirited and all around good folks, I adore them all. We keep in touch through Facebook. Like me, they are practical for the most part, and pragmatic always. They are not pink people at all. But I just found out that everyone in the family (except their father, who is stationed in the Middle East) went out on a special shopping trip to purchase pink watches, which they intend to wear in my honor until I am well again. I cried when I got their message and I know every moment my watch ticks with theirs. An immense comfort.
A week ago someone I barely knew wrote me the most wonderful, supportive, heartfelt notes. It was one of those letters that take awhile to answer, mostly because they render you speechless. The spirit of that amazing person reaches out to embrace you and you are supported at your weakest. The note would have been enough, honestly, to install her in my heart forever, but today she surprised me with the gift of a very fashionable portable file (to carry my records back and forth.) It was stuffed with M&M's and gum and a pink pen on a lanyard. She also gave me her favorite basket and in it was her favorite book, nestled in her favorite scarf, surrounded by her favorite chocolates. All to keep next to my recliner during those weeks that I recover...I had no words to thank her. I think I just cried.
My wonderful Mother-In-Law has offered to let us stay with them for two weeks after the surgery. She will do the cooking and will care for and love on my kids, maybe get them through their finals. She even offered to hire a nurse so that my husband can get some sleep. I haven't answered her email yet. I sit down, but then can't find the words to properly thank her. I give up, I just can't face that generosity without losing it.
ALL of the support I have experienced has been astounding and overwhelming. My heart has to expand to allow it all in. I am filled with love and fear in equal amounts. They don't war with each other. They coexist side by side, both taking up more and more space. They are like tissue expanders for my soul. They are remodeling me.
This is the gift of Cancer.
The apple doesn't fall far from the tree, his whole family is really great. Fun, free spirited and all around good folks, I adore them all. We keep in touch through Facebook. Like me, they are practical for the most part, and pragmatic always. They are not pink people at all. But I just found out that everyone in the family (except their father, who is stationed in the Middle East) went out on a special shopping trip to purchase pink watches, which they intend to wear in my honor until I am well again. I cried when I got their message and I know every moment my watch ticks with theirs. An immense comfort.
A week ago someone I barely knew wrote me the most wonderful, supportive, heartfelt notes. It was one of those letters that take awhile to answer, mostly because they render you speechless. The spirit of that amazing person reaches out to embrace you and you are supported at your weakest. The note would have been enough, honestly, to install her in my heart forever, but today she surprised me with the gift of a very fashionable portable file (to carry my records back and forth.) It was stuffed with M&M's and gum and a pink pen on a lanyard. She also gave me her favorite basket and in it was her favorite book, nestled in her favorite scarf, surrounded by her favorite chocolates. All to keep next to my recliner during those weeks that I recover...I had no words to thank her. I think I just cried.
My wonderful Mother-In-Law has offered to let us stay with them for two weeks after the surgery. She will do the cooking and will care for and love on my kids, maybe get them through their finals. She even offered to hire a nurse so that my husband can get some sleep. I haven't answered her email yet. I sit down, but then can't find the words to properly thank her. I give up, I just can't face that generosity without losing it.
ALL of the support I have experienced has been astounding and overwhelming. My heart has to expand to allow it all in. I am filled with love and fear in equal amounts. They don't war with each other. They coexist side by side, both taking up more and more space. They are like tissue expanders for my soul. They are remodeling me.
This is the gift of Cancer.
Saturday, April 2, 2011
Day 10 Birthdays
Birthday, birthday, birthday, birthday...That's what the MRI said. The odd arrangements of clanks and bangs, mixed with the buzzing and grinding spoke to me. A distinct male voice, just a little mechanical repeating birthday, birthday, birthday.
The tube was so much tighter than I thought it would have been. I felt some contact on my left hip and it made me want to move over. Of course that was out of the question, all I could do was try to relax and bear the contact. It resembled an over close seat mate, I wanted to get up and find a seat of my own. A seat with more room. The technician told me I could breathe, but to try not to move my chest wall, so my breaths were shallow. My naked breasts were hanging from my chest and pressed tight in their own little imaging cylinders. I had earplugs, but it was still very loud.
I am not, by nature, claustrophobic but I kept feeling this almost uncontrollable urge to move, like a surge of panic impelling me to flee or be eaten. In the breaks between mechanical sounds, when I thought they were moving the imager, I would take a deep breath, to sink into a deeper state of relaxation and let the man in the MRI machine speak to me. Dot, dot, dot, birthday, birthday, birthday.
Earlier, as I entered the imaging room, the technician put in my IV, when she was done her partner inserted a needle into the port and started injecting fluid, I asked what it was and he looked at me with a smirk and said "saline." Like it was an impertinent question. This is my new normal. I breathe and try to relax.
Birthday, birthday, birthday. I will celebrate every birthday after this with a party. Gifts aren't necessary, the only gift I need is another birthday. After this, that will be my new normal.
The tube was so much tighter than I thought it would have been. I felt some contact on my left hip and it made me want to move over. Of course that was out of the question, all I could do was try to relax and bear the contact. It resembled an over close seat mate, I wanted to get up and find a seat of my own. A seat with more room. The technician told me I could breathe, but to try not to move my chest wall, so my breaths were shallow. My naked breasts were hanging from my chest and pressed tight in their own little imaging cylinders. I had earplugs, but it was still very loud.
I am not, by nature, claustrophobic but I kept feeling this almost uncontrollable urge to move, like a surge of panic impelling me to flee or be eaten. In the breaks between mechanical sounds, when I thought they were moving the imager, I would take a deep breath, to sink into a deeper state of relaxation and let the man in the MRI machine speak to me. Dot, dot, dot, birthday, birthday, birthday.
Earlier, as I entered the imaging room, the technician put in my IV, when she was done her partner inserted a needle into the port and started injecting fluid, I asked what it was and he looked at me with a smirk and said "saline." Like it was an impertinent question. This is my new normal. I breathe and try to relax.
Birthday, birthday, birthday. I will celebrate every birthday after this with a party. Gifts aren't necessary, the only gift I need is another birthday. After this, that will be my new normal.
Friday, April 1, 2011
Day Nine Benedryl Blessings
I can't sleep at night. I can't nap either. It's been 9 days and I have run out of gas. My mind runs on and on and I can't stop it.
Before my shower I took two Benedryl and I hope that will do the job for me and for my husband. When I don't sleep neither does he. We both look just a little older than we did a week ago. My mind is not clear but my heart is full. I have been surrounded by support and love, so much that I can feel it. My husband cares for and adores me. I am being held up.
My stunt sons came by this evening, excited to tell me that their mother gave them permission to shave their heads in solidarity when I have chemo. They are so thrilled to go bald. I tell them that some people take chemotherapy and keep their hair. They are shaving their heads anyway. It makes me giggle.
I have received emails and Facebook posts that I want to print out and tie up with a ribbon like love letters. When I am through with this I want to look back and remember the goodness of humanity.
Why is it that, late at night, even these blessings can't help me sleep?
Before my shower I took two Benedryl and I hope that will do the job for me and for my husband. When I don't sleep neither does he. We both look just a little older than we did a week ago. My mind is not clear but my heart is full. I have been surrounded by support and love, so much that I can feel it. My husband cares for and adores me. I am being held up.
My stunt sons came by this evening, excited to tell me that their mother gave them permission to shave their heads in solidarity when I have chemo. They are so thrilled to go bald. I tell them that some people take chemotherapy and keep their hair. They are shaving their heads anyway. It makes me giggle.
I have received emails and Facebook posts that I want to print out and tie up with a ribbon like love letters. When I am through with this I want to look back and remember the goodness of humanity.
Why is it that, late at night, even these blessings can't help me sleep?
Thursday, March 31, 2011
Day Eight The Boneyard
I love my gym. I belong to a Crossfit gym down town, on the wrong side of the railroad tracks next to the steel fabrication plant and a recycling plant The pavement is heaved and cracked, potholes are the rule and a steady parade of dumptrucks and semis pass our open garage door. When it rains, which is often, the rain drips through the corregated tin warehouse roof and washes off the chalky hashmarks that track our AMRAPs. 5:00am finds it full of sweaty, straining, stinking bodies united in support of their own and everyone else's personal best and dying for their first cup of coffee.
I have belonged to Crossfit gyms before, but each one is different and I love this one. It's been dubbed The Boneyard and I am comfortable there. As comfortable as you can be doing Air Squats, Box Jumps, and finding your Max Dead Lift...It is the place that I have chosen to rehab myself after a cascade of injuries this last year. I am gettiing stronger and shedding pounds slowly, but more importantly I am regaining my chutzpah.
So far they have managed to keep me from injuring myself, not an easy task as I am a pusher. I allow them to choose my weights for me, as I would reach just a little farther than is prudent during this slow comeback. How hard I work within their parameters is entirely my own decision, and I wring every bit of effort from myself. Why would I do less than everyone else there? It would be embarrassing.
Women are the minority, but they are not looked down upon or subjected to condescencion, it simply would not be allowed as one of the owners is a woman and she would kick their ass. Everyone knows everyone else, newbies are welcomed by the whole. Help is ever present, encouragement is abundant. Nirvana. Leave your ego at the door and push yourself 'till you drop.
I told the female partner Jennie about my diagnosis and how I am determined to make Crossfit a partner in my recovery. We teared up, discreetly, 'cause we don't want the guys to think we are crybabies. I think we both realized that I was making an important decision to be, not just a survivor, but a conquerer. The day I return from my surgery I might just plink an exercise band while everyone else plays Wall Ball, but it will be an important day on the road to recovery. Chemo will be another thing entirely, but I will still come even if it's just to row and stretch.
The next day I received an email asking me if I would mind that the Boneyard will be walking in the local Joy to Life breast cancer walk in my honor. I was more than surprised, unexpectedly I felt PROUD. Very soon after I started receiving emails offering support and prayers. I really feel their support behind me, solidly. I know they won't accept less than everything I've got and they'll be there to add a little of their own strength to help me pull through. There will be no retreat and no surrender. It would be embarrassing.
I have belonged to Crossfit gyms before, but each one is different and I love this one. It's been dubbed The Boneyard and I am comfortable there. As comfortable as you can be doing Air Squats, Box Jumps, and finding your Max Dead Lift...It is the place that I have chosen to rehab myself after a cascade of injuries this last year. I am gettiing stronger and shedding pounds slowly, but more importantly I am regaining my chutzpah.
So far they have managed to keep me from injuring myself, not an easy task as I am a pusher. I allow them to choose my weights for me, as I would reach just a little farther than is prudent during this slow comeback. How hard I work within their parameters is entirely my own decision, and I wring every bit of effort from myself. Why would I do less than everyone else there? It would be embarrassing.
Women are the minority, but they are not looked down upon or subjected to condescencion, it simply would not be allowed as one of the owners is a woman and she would kick their ass. Everyone knows everyone else, newbies are welcomed by the whole. Help is ever present, encouragement is abundant. Nirvana. Leave your ego at the door and push yourself 'till you drop.
I told the female partner Jennie about my diagnosis and how I am determined to make Crossfit a partner in my recovery. We teared up, discreetly, 'cause we don't want the guys to think we are crybabies. I think we both realized that I was making an important decision to be, not just a survivor, but a conquerer. The day I return from my surgery I might just plink an exercise band while everyone else plays Wall Ball, but it will be an important day on the road to recovery. Chemo will be another thing entirely, but I will still come even if it's just to row and stretch.
The next day I received an email asking me if I would mind that the Boneyard will be walking in the local Joy to Life breast cancer walk in my honor. I was more than surprised, unexpectedly I felt PROUD. Very soon after I started receiving emails offering support and prayers. I really feel their support behind me, solidly. I know they won't accept less than everything I've got and they'll be there to add a little of their own strength to help me pull through. There will be no retreat and no surrender. It would be embarrassing.
Wednesday, March 30, 2011
Day Seven Regaining Control
It felt great to go back to the gym today. There is something so centering about pain and concentrated effort. My head is not in the game yet and my hip is still gimpy but I completed the workout. Hell, I'm just proud of myself for being there, you see Insomnia has been my lover for the past week. We wrestle each other all night, he can't get enough of me. He is not a generous lover, taking what he wants and leaving me exhausted. Bastard. Getting out of bed at 5:00a.m. is really very hard. I have to go though. This is a necessity in my New Normal.
Today I had my MRI to see if my infiltrating cancer has spread past the locations that we initially found. Thankfully it has not. My lymph nodes are clear. Maybe I will sleep tonight.
We have time to think. Not a lot of time, but some. Maybe enough to make the right decisions. I have been feeling out of control lately. My husband's uncle, a gynecologist in South Carolina, has told us to take a breath and get an education. I am taking his advice to heart. It does not suit me at all to feel out of control in this situation. I am in the saddle after a bad jump, my boots have fallen from the stirrups and my reins have slipped from my hands. The next jump is just ahead and the horse is still running. I have to sit deep in the saddle, center myself, regain contact with my horse by calmly gathering my reins. That is all I can do before this next jump, after that maybe I can search for my stirrups.
Prioritize, be systematic, know my options, hang on baby cause this next jump is going to be a doozy.
My husband's other uncle has made arrangements for us to consult the best breast cancer physician in the country. We will call tomorrow and make plans to fly to Houston.
Our cousin in Birmingham does Diep Flap reconstruction. We will speak to him about doing the surgery up there.
We will speak to a local breast surgeon here and see what he has to say.
I will shore up my ever expanding support group. I wish I had the energy to write about it today, but I can't do it justice. Definitely tomorrow.
Things are coming together, not coming apart.
Today I had my MRI to see if my infiltrating cancer has spread past the locations that we initially found. Thankfully it has not. My lymph nodes are clear. Maybe I will sleep tonight.
We have time to think. Not a lot of time, but some. Maybe enough to make the right decisions. I have been feeling out of control lately. My husband's uncle, a gynecologist in South Carolina, has told us to take a breath and get an education. I am taking his advice to heart. It does not suit me at all to feel out of control in this situation. I am in the saddle after a bad jump, my boots have fallen from the stirrups and my reins have slipped from my hands. The next jump is just ahead and the horse is still running. I have to sit deep in the saddle, center myself, regain contact with my horse by calmly gathering my reins. That is all I can do before this next jump, after that maybe I can search for my stirrups.
Prioritize, be systematic, know my options, hang on baby cause this next jump is going to be a doozy.
My husband's other uncle has made arrangements for us to consult the best breast cancer physician in the country. We will call tomorrow and make plans to fly to Houston.
Our cousin in Birmingham does Diep Flap reconstruction. We will speak to him about doing the surgery up there.
We will speak to a local breast surgeon here and see what he has to say.
I will shore up my ever expanding support group. I wish I had the energy to write about it today, but I can't do it justice. Definitely tomorrow.
Things are coming together, not coming apart.
Tuesday, March 29, 2011
Day Six What I Do When I Am Doing Nothing
I haven't cleaned the house in a week. It smells like 4 dogs, two teenagers, a weeks worth of laundry and a husband. I feel like a slacker just sitting around and letting this happen. My Husband says he and the kids will take care of it, and I believe with all of my heart that they have tried. And failed. So I file my rusty brain to a dull nib and get at it.
This is how I do housework. First I clutter bust the house, gathering everything that is out of place and either dumping it in piles in the kids rooms or putting it away. I get all of my cleaning stuff together and attack a room, top to bottom, clockwise, trash goes out and vacuuming and mopping end the job. After that it's on to the next room. It's a system. A child could do it, and by that I mean another person's child. Mine haven't seen this knowledge for the goldmine that it is.
Today I can't get with my system, I am like a marble in a boxcar, rattling around. Doing a little here and a little there. Making lists in my head, but none of them have to do with housework. My list goes like this:
Buy a recliner. How am I going to be expected to lay flat after a double mastectomy with a reconstruction?
Install a dog door. 4 dogs, 'nuff said.
Find a cleaning woman to help during my recovery. See above.
Buy men's drawstring pajama bottoms and button front men's shirts. Only men's have pockets, I don't know why. I also need camisole with built in bras. I read that they are helpful in holding the drains.
Find an adoptive home for Martin. He hates being with other dogs and I won't be able to referee when he stages a throw down. I also won't be able to clean up after him when he leaves a steaming, vengeful pile in the corner.
Teach my husband to pay the bills.
Put together an organizational system for my medical related paperwork, medication logs, etc. Maybe a large binder.
Teach Rachel to drive. She might be able to get her license in April and that would help alot.
Look at breasts. Pick out a pair.
Purchase a bunch of pillows. I hear the buckwheat hull type are good for propping your arms.
Make sure we are stocked with supplies for bandaging.
Learn about drains and post operative care.
Designate a photographer
Make an appointment at MD Anderson
Clean the house...
This is how I do housework. First I clutter bust the house, gathering everything that is out of place and either dumping it in piles in the kids rooms or putting it away. I get all of my cleaning stuff together and attack a room, top to bottom, clockwise, trash goes out and vacuuming and mopping end the job. After that it's on to the next room. It's a system. A child could do it, and by that I mean another person's child. Mine haven't seen this knowledge for the goldmine that it is.
Today I can't get with my system, I am like a marble in a boxcar, rattling around. Doing a little here and a little there. Making lists in my head, but none of them have to do with housework. My list goes like this:
Buy a recliner. How am I going to be expected to lay flat after a double mastectomy with a reconstruction?
Install a dog door. 4 dogs, 'nuff said.
Find a cleaning woman to help during my recovery. See above.
Buy men's drawstring pajama bottoms and button front men's shirts. Only men's have pockets, I don't know why. I also need camisole with built in bras. I read that they are helpful in holding the drains.
Find an adoptive home for Martin. He hates being with other dogs and I won't be able to referee when he stages a throw down. I also won't be able to clean up after him when he leaves a steaming, vengeful pile in the corner.
Teach my husband to pay the bills.
Put together an organizational system for my medical related paperwork, medication logs, etc. Maybe a large binder.
Teach Rachel to drive. She might be able to get her license in April and that would help alot.
Look at breasts. Pick out a pair.
Purchase a bunch of pillows. I hear the buckwheat hull type are good for propping your arms.
Make sure we are stocked with supplies for bandaging.
Learn about drains and post operative care.
Designate a photographer
Make an appointment at MD Anderson
Clean the house...
Monday, March 28, 2011
Day Five Stage Three
Anger is a most unsafe emotion. My mother was an angry, dangerous, vengeful, sometimes violent, depressive, unpredictable woman. Anger made me freeze when I was little, it's better now that I am older and have developed healthier ways of dealing with strong emotions. I haven't seen or heard from my family in 15 years, that has encouraged my recovery, necessary because mommy dearest endowed me with all of her menacing skills. My sainted husband has helped me a lot by being a wonderful example and an even better anger catalyst. I have practiced my explosions of unhealthy anger on him for years and have finally learned how not to fight dirty, how to listen, how to create something good out of strife and disagreement. It's been a long road. I like it much better this way. He had helped create a better person out of me, bless his battle tested soul.
Today my mother came back to visit in the form of wild, out of control anger. My inner child is hiding under the bed.
You can talk about anger as a step in the process of grieving, but you cannot understand it until you experience it. This is not miffed, vexed, cranky or irate; this is violent and dangerous fury. It is unreasonable and it is mixed in with despair. It's an emotional parfait. A layer of gall, a layer of hopelessness, a layer of fear, another layer of gall and so on.
I keep cramming it down so it doesn't effect my family. That can't be healthy, but it seems preferable to being the hissy fit hussy that everyone wants to avoid.
Tomorrow my in laws come home from their trip to New York City. I had better get myself under control by then because, after we tell them, all hell is going to break loose. My MRI is scheduled for Wednesday afternoon. The wheels are rolling faster and faster. Strength and peace are called for here and they are in very short supply.
Today my mother came back to visit in the form of wild, out of control anger. My inner child is hiding under the bed.
You can talk about anger as a step in the process of grieving, but you cannot understand it until you experience it. This is not miffed, vexed, cranky or irate; this is violent and dangerous fury. It is unreasonable and it is mixed in with despair. It's an emotional parfait. A layer of gall, a layer of hopelessness, a layer of fear, another layer of gall and so on.
I keep cramming it down so it doesn't effect my family. That can't be healthy, but it seems preferable to being the hissy fit hussy that everyone wants to avoid.
Tomorrow my in laws come home from their trip to New York City. I had better get myself under control by then because, after we tell them, all hell is going to break loose. My MRI is scheduled for Wednesday afternoon. The wheels are rolling faster and faster. Strength and peace are called for here and they are in very short supply.
Sunday, March 27, 2011
Day Four Watching the Hummingbirds
It's hummingbird season here. I don't know much about them, it's enough for me to watch their irridescent, ruby throated flitting. In order to attract hummingbirds you have to set out nectar sometimes for two or three seasons. Word has to spreadthrough the hummingbird media I guess. After that you shouldn't let them down, you need to commit to setting out the hummingbird buffet each year. It's an honor really, they are extraordinary creatures. I no longer set out the nectar and haven't for many years, but the kids and I used to. We would watch them together from the kitchen window,fascinated. I miss that.
The kids grew up and I got busier making their time my occupation. I'm glad I did it, very few women do that anymore, full time mothering. I don't judge, the choice to stay at home or not to stay at home is difficult and takes great personal sacrifice either way. Managing my daughter's autism was a full time job that noone could do but me. She's much better now. My son too, has become an independent person with his own life. I no longer need to spend my entire day with my kids. Now I work outside the home. I no longer drive them everywhere they go and listen to their conversations and arguments. I miss that.
My husband and I told our children about my diagnosis, giving them the facts and telling them that we would need their support through this treatment period. Surprisingly they didn't say much of anything. The tears I had been prepared for didn't come, there were no questions. I don't know if they are brave or unconcerned, honestly. Clearly they think I am the kind of woman who is difficult to kill.
Then something extraordinary happened. My elusive Aspie daughter started coming out of her room, without being asked, to sit with me on the couch. Close enough so our hips almost touch. When I reach out to touch her hair she doesn't flinch, she just turns and looks at me, right in my eyes. My son sits across the room, glancing up occasionally and smiling. He is the first person to get up when I seem to need something. For the past two days they have hovered there. Irridescent. I watch, fascinated. It's an honor really.
The kids grew up and I got busier making their time my occupation. I'm glad I did it, very few women do that anymore, full time mothering. I don't judge, the choice to stay at home or not to stay at home is difficult and takes great personal sacrifice either way. Managing my daughter's autism was a full time job that noone could do but me. She's much better now. My son too, has become an independent person with his own life. I no longer need to spend my entire day with my kids. Now I work outside the home. I no longer drive them everywhere they go and listen to their conversations and arguments. I miss that.
My husband and I told our children about my diagnosis, giving them the facts and telling them that we would need their support through this treatment period. Surprisingly they didn't say much of anything. The tears I had been prepared for didn't come, there were no questions. I don't know if they are brave or unconcerned, honestly. Clearly they think I am the kind of woman who is difficult to kill.
Then something extraordinary happened. My elusive Aspie daughter started coming out of her room, without being asked, to sit with me on the couch. Close enough so our hips almost touch. When I reach out to touch her hair she doesn't flinch, she just turns and looks at me, right in my eyes. My son sits across the room, glancing up occasionally and smiling. He is the first person to get up when I seem to need something. For the past two days they have hovered there. Irridescent. I watch, fascinated. It's an honor really.
Saturday, March 26, 2011
Day Three, 40 Kids and a Horse
I spent the whole day with my son. He is, without a doubt the greatest companion anyone could ask for. Anyone who knows him will tell you so, spending time with him is a pure joy. First off he is very funny, but not in an overt way, this is more of a dry observant wit. He has moments of pithiness coated in moments of just pure acceptance. If every you want to know what it is like to be accepted unconditionally you want to hang out with my son. People line up to spend the day with this wonderful boy and today I was the lucky one.
We woke up at 6:30 on a Saturday morning to manage a workday at the barn. My son brought his favorite toy (outside of the riding mower), his power washer. It was his job to clean the barn aisle and wash racks while I managed 40 Junior High kids from a large local church. He did not complain once and worked like a Trojan. So did this group of kids and their accompanying parents and ministers. At the end of the morning the barn looked like a shiny new penny.
Standing in the flow of all of that energy is exhausting. It's loud, chaotic, crazy, silly and life affirming. My pink watch ticked on my wrist and I stood in the middle of the churn, maybe the first time without any expectation or agenda. I did not think of the next 5 things on the "to do" list. I just stood. In the barn, with my son, listening to life and I was happy. Not tiny happy, big happy. You shouldn't need cancer to have moments like this.
After the flood of giggling hormones re boarded their bus I looked for my boy. He was soaking wet and grumpy; a warning sign. Only grumpy when hungry, this is my last warning before a total attitudinal meltdown, he is just like his dad that way. Though lunch at McDonald's is not a treat for me, but it is a treat for my son and, after this morning, he deserves his Southern Style Chicken Sandwich Combo with an Orange Drink. I think he ate it in one minute. There were no crumbs, I was amazed he had a wrapper left. When I reached down for my small soda it too was gone. Teenage boys are not to be trusted around food.
Last thing we needed to do was quickly deliver my mare to my trainer. After a fall I had last month, my husband and I decided to send my green horse to a trainer for more work under the saddle. He's right, it's cheaper than a broken hip. I am happy that I made these arrangements before my diagnosis. If I hadn't her training would have been left for later, maybe after my recovery. As it is, she will be ready to help me through my recovery. I will ride through all of it, on my horse who I love, trained by my dear friend who I love.
A beautiful appaloosa mare, bright colored Bay with a frost blanket. She is a delight, but always an appaloosa. Appy owners will know what I am talking about here. They are the image of smart and stubborn. Whey they learn a new behavior it requires time, not because they don't understand (they do), but but because they have to agree. My horse doesn't agree that trailering is something that she should do. I have been feeding her in the trailer for a couple of days so that loading day would go according to plan. When the time comes to load I put her food in the trailer, walked her up and she acts like she had never done this before. No way Jose.
My son and I spent two hours trying everything we knew to get that horse in the trailer and nothing worked. We had to call my friend and trainer to come and help. Eventually, between the three of us we got her loaded, transported, and unloaded. Her mind was blown. What an upsetting thing it is to find yourself transported from your familiar existence, to a place that is unfamiliar. Where you don't know what is going to happen next and who you are going to have to deal with. You don't know if you are going to survive, life is turned upside down and you are petrified with fear.
Be brave my little horse. We will be courageous together.
We woke up at 6:30 on a Saturday morning to manage a workday at the barn. My son brought his favorite toy (outside of the riding mower), his power washer. It was his job to clean the barn aisle and wash racks while I managed 40 Junior High kids from a large local church. He did not complain once and worked like a Trojan. So did this group of kids and their accompanying parents and ministers. At the end of the morning the barn looked like a shiny new penny.
Standing in the flow of all of that energy is exhausting. It's loud, chaotic, crazy, silly and life affirming. My pink watch ticked on my wrist and I stood in the middle of the churn, maybe the first time without any expectation or agenda. I did not think of the next 5 things on the "to do" list. I just stood. In the barn, with my son, listening to life and I was happy. Not tiny happy, big happy. You shouldn't need cancer to have moments like this.
After the flood of giggling hormones re boarded their bus I looked for my boy. He was soaking wet and grumpy; a warning sign. Only grumpy when hungry, this is my last warning before a total attitudinal meltdown, he is just like his dad that way. Though lunch at McDonald's is not a treat for me, but it is a treat for my son and, after this morning, he deserves his Southern Style Chicken Sandwich Combo with an Orange Drink. I think he ate it in one minute. There were no crumbs, I was amazed he had a wrapper left. When I reached down for my small soda it too was gone. Teenage boys are not to be trusted around food.
Last thing we needed to do was quickly deliver my mare to my trainer. After a fall I had last month, my husband and I decided to send my green horse to a trainer for more work under the saddle. He's right, it's cheaper than a broken hip. I am happy that I made these arrangements before my diagnosis. If I hadn't her training would have been left for later, maybe after my recovery. As it is, she will be ready to help me through my recovery. I will ride through all of it, on my horse who I love, trained by my dear friend who I love.
A beautiful appaloosa mare, bright colored Bay with a frost blanket. She is a delight, but always an appaloosa. Appy owners will know what I am talking about here. They are the image of smart and stubborn. Whey they learn a new behavior it requires time, not because they don't understand (they do), but but because they have to agree. My horse doesn't agree that trailering is something that she should do. I have been feeding her in the trailer for a couple of days so that loading day would go according to plan. When the time comes to load I put her food in the trailer, walked her up and she acts like she had never done this before. No way Jose.
My son and I spent two hours trying everything we knew to get that horse in the trailer and nothing worked. We had to call my friend and trainer to come and help. Eventually, between the three of us we got her loaded, transported, and unloaded. Her mind was blown. What an upsetting thing it is to find yourself transported from your familiar existence, to a place that is unfamiliar. Where you don't know what is going to happen next and who you are going to have to deal with. You don't know if you are going to survive, life is turned upside down and you are petrified with fear.
Be brave my little horse. We will be courageous together.
Friday, March 25, 2011
Diagnosis and a Pink Watch
I love a Doctor who sits on the sofa next to your chairs. It is such a formidable distance to span when they sit behind their desks. That barrier must protect them from the psychic overflow splashing out of their Visitor chairs. It's an act of bravery and compassion to choose the exposure of the sofa. It says "I am with you to help you wade through your shock and misery." "I am not afraid to show you how I really feel in the face of what you are feeling right now." "Don't be afraid, I am here."
Dr. C was professional, knowledgeable and human. She treated us with dignity and like partners, answering our questions without any condescension. Stage 2 invasive lobular carcinoma. Prognosis "good." I really wanted to hear "excellent."
I had a list of questions to ask about the tumors, turns out they will have to be addressed to my oncologist after my MRI. Hopefully it hasn't spread, and I don't think it has. We took images of my lymph nodes and they looked completely clear. The tumors are small, she is still amazed that I could feel them.
Looks like a double of mastectomy with a tram flap. Is it wrong that I am excited about a tummy tuck and big girl titties? I am going to be HOT.
And I am going to live.
When I first held my children after I gave birth I was disappointed that I didn't feel the instant overwhelming love that I had imagined. That came later and was indeed overwhelming. I just needed time. So I guess I shouldn't be shocked that I didn't get that "survivor" feeling right away either. I felt so weak and vulnerable. My husband was my rock and my island of solitude and I felt so needy. Not like a Survivor at all. The vortex of cancer was sucking my in and I couldn't even dog paddle. That is changing now. I feel my old self ebbing back, the shock of the first punch is wearing off and I am ready to finish this bar fight. Damn it, I am 48 years young, I have two teenage kids, I ride horses, I lift weights, I love living. Fuck you cancer, you are going down.
At least I think you are.
On the way home my husband and I stopped for ice cream. I am a "one scoop in a cup" kind of girl, but today I ordered two scoops on a waffle cone. I need my tummy for my new boobs. After we stopped at a friends jewelry store and my husband bought me a $300.00 Reactor watch with a pink mother of pearl face. The most expensive watch I have ever owned was a Seiko, bought on sale, but he knew I needed a bullet proof, Wonder woman bracelet. For this, super hero powers are called for.
I love it, and intend to wear it every day.
Tonight we will tell the kids. I will fill them with hope and optimism, but first I need a martini.
Dr. C was professional, knowledgeable and human. She treated us with dignity and like partners, answering our questions without any condescension. Stage 2 invasive lobular carcinoma. Prognosis "good." I really wanted to hear "excellent."
I had a list of questions to ask about the tumors, turns out they will have to be addressed to my oncologist after my MRI. Hopefully it hasn't spread, and I don't think it has. We took images of my lymph nodes and they looked completely clear. The tumors are small, she is still amazed that I could feel them.
Looks like a double of mastectomy with a tram flap. Is it wrong that I am excited about a tummy tuck and big girl titties? I am going to be HOT.
And I am going to live.
When I first held my children after I gave birth I was disappointed that I didn't feel the instant overwhelming love that I had imagined. That came later and was indeed overwhelming. I just needed time. So I guess I shouldn't be shocked that I didn't get that "survivor" feeling right away either. I felt so weak and vulnerable. My husband was my rock and my island of solitude and I felt so needy. Not like a Survivor at all. The vortex of cancer was sucking my in and I couldn't even dog paddle. That is changing now. I feel my old self ebbing back, the shock of the first punch is wearing off and I am ready to finish this bar fight. Damn it, I am 48 years young, I have two teenage kids, I ride horses, I lift weights, I love living. Fuck you cancer, you are going down.
At least I think you are.
On the way home my husband and I stopped for ice cream. I am a "one scoop in a cup" kind of girl, but today I ordered two scoops on a waffle cone. I need my tummy for my new boobs. After we stopped at a friends jewelry store and my husband bought me a $300.00 Reactor watch with a pink mother of pearl face. The most expensive watch I have ever owned was a Seiko, bought on sale, but he knew I needed a bullet proof, Wonder woman bracelet. For this, super hero powers are called for.
I love it, and intend to wear it every day.
Tonight we will tell the kids. I will fill them with hope and optimism, but first I need a martini.
Thursday, March 24, 2011
Day One
I will always remember the moment my fingers hit the speed bump in my left breast. I was showering and just trying to recover from the same respiratory infection everyone else in this town has. You know the one that starts in the back of your throat like a warning shot. Moving immediately and deliberately into your head before rolling like a tsunami of mucous into your chest. I couldn't speak or breathe and the steam from the hot water was so wonderful.
My day was spent marching endlessly in the therapeutic riding facility where I work. I love what I do and rarely look at the clock, this day was an exception. On top of the freezing temperatures, fatigue, coughing and headache one of the horses, Dallas had punched me in the chest, hard. A pony sized bay gelding with a cantankerous attitude, he is famous for eating his handlers and walking out of the mount. You have to stand in front of him like a door and be brave enough not to flinch, only then will he leave you alone. This test of fortitude and dominance is often a learned skill, and I had a new tasty volunteer leading, She was dancing to get away from him and he was having a ball making her jerk like a puppet. I took his head to show her the technique and he made a fool out of me by driving his head into my chest. There's alot of muscle in a horses neck and, if he had wanted to, I would have been sitting on the ground. As it was I was just bruised and cross.
I was pressing into my sore sternum. The shower's heat soothing my sore tissues, my fingers moved up and through my right breast, making circles when I found an abused intercostal space, combing through the inflamed tissue and bringing relief...blessed relief. I moved automatically to the left breast and relief turned to shock.
Thickening. A plane of it with a nodule in the middle. It hurt. It was not a lymph node. I was a massage therapist for over 10 years, and I knew what I was feeling was not anything I had felt before. I could not pull my fingers off. I was frozen. Over a period of several minutes the voice of denial got louder and finally screamed: "It's a bruise you silly heifer! You were punched in the chest by a horse, what did you think you would find?"
Absolutely, I knew that voice for what it was, but I waited hopefully for that "bruise" to disappear. A month later it was still there. I made an appointment for a mammogram. I had to wait two months. For two months my hand kept it's vigil on my left breast. I was a walking Pledge of Allegiance. Indivisible. Under G.d.
Yesterday I had my mammogram, followed by an ultrasound. We saw two growths, close together with fingers. Each less than a cm. The Doctor couldn't believe I had felt them. She says, with almost perfect certainty, we are looking at a malignancy. I wasn't surprised. I wasn't anything. I made my appointment (the next day per my physician) for 8:00 am the next morning. Today.
My husband came with me. He waited in the lobby with my purse while I disrobed and laid on the table. I didn't know what to expect, so for any readers who are curious here's how it goes: The technician/nurse exposes your breast and cleans it several times after laying a sterile field. She locates the lesion(s) using ultrasound and calls in the Doctor. The physician asks me to close my eyes at this point. She says that if any of the anesthetic splashes into your eyes it will burn, "better to be safe" she says. I think it's so you can't see the giant needles she is going to pull out and go into a mindless panic. I've seen the needles before. I close my eyes. She injects the breast with an anesthetic to numb it. The needle is moved progressively deeper into the breast tissue but just a little at a time and the spreading numbness makes it only a little uncomfortable...not bad.
The Physician makes a small incision and inserts a large hollow (obviously) needle up to and into the body of the lesion. I felt nothing at all. Samples are taken by inserting a grabber thingy and pulling a trigger. There is an audible pop and a burst of pain. She took 8 samples. I don't know if that's a lot, I didn't ask. I laid on the table and breathed deeply and spoke to the Doctor about Yoga. A passion for both of us. It helped. Still, by the end of the procedure I was done and trembling. Partly from shock and partly from the autonomic effect of the anesthetic.
I don't want to do it again, but if I had to I know it wouldn't kill me. Right now I am on ice...happily.
Lane helped me out to the car. I was followed by knowing, sympathetic glances as I walked through the lobby of the Cancer Center and out the door...but not for long. I have resolved to learn everyone's name. Lori was my xray tech today. Her son is having trouble at school. He's super smart and super bored. My daughter is the same way. I resolved to find her a math tutor in her area.
Tomorrow afternoon we go back for the findings. I have to write down my questions, I won't remember them all. Lane will be there to hear the answers and remember. He said the sweetest thing today. I said "This is not going to be a walk in the park." He answered "No, it's going to be a hike, but I'll be here to carry your pack."
My day was spent marching endlessly in the therapeutic riding facility where I work. I love what I do and rarely look at the clock, this day was an exception. On top of the freezing temperatures, fatigue, coughing and headache one of the horses, Dallas had punched me in the chest, hard. A pony sized bay gelding with a cantankerous attitude, he is famous for eating his handlers and walking out of the mount. You have to stand in front of him like a door and be brave enough not to flinch, only then will he leave you alone. This test of fortitude and dominance is often a learned skill, and I had a new tasty volunteer leading, She was dancing to get away from him and he was having a ball making her jerk like a puppet. I took his head to show her the technique and he made a fool out of me by driving his head into my chest. There's alot of muscle in a horses neck and, if he had wanted to, I would have been sitting on the ground. As it was I was just bruised and cross.
I was pressing into my sore sternum. The shower's heat soothing my sore tissues, my fingers moved up and through my right breast, making circles when I found an abused intercostal space, combing through the inflamed tissue and bringing relief...blessed relief. I moved automatically to the left breast and relief turned to shock.
Thickening. A plane of it with a nodule in the middle. It hurt. It was not a lymph node. I was a massage therapist for over 10 years, and I knew what I was feeling was not anything I had felt before. I could not pull my fingers off. I was frozen. Over a period of several minutes the voice of denial got louder and finally screamed: "It's a bruise you silly heifer! You were punched in the chest by a horse, what did you think you would find?"
Absolutely, I knew that voice for what it was, but I waited hopefully for that "bruise" to disappear. A month later it was still there. I made an appointment for a mammogram. I had to wait two months. For two months my hand kept it's vigil on my left breast. I was a walking Pledge of Allegiance. Indivisible. Under G.d.
Yesterday I had my mammogram, followed by an ultrasound. We saw two growths, close together with fingers. Each less than a cm. The Doctor couldn't believe I had felt them. She says, with almost perfect certainty, we are looking at a malignancy. I wasn't surprised. I wasn't anything. I made my appointment (the next day per my physician) for 8:00 am the next morning. Today.
My husband came with me. He waited in the lobby with my purse while I disrobed and laid on the table. I didn't know what to expect, so for any readers who are curious here's how it goes: The technician/nurse exposes your breast and cleans it several times after laying a sterile field. She locates the lesion(s) using ultrasound and calls in the Doctor. The physician asks me to close my eyes at this point. She says that if any of the anesthetic splashes into your eyes it will burn, "better to be safe" she says. I think it's so you can't see the giant needles she is going to pull out and go into a mindless panic. I've seen the needles before. I close my eyes. She injects the breast with an anesthetic to numb it. The needle is moved progressively deeper into the breast tissue but just a little at a time and the spreading numbness makes it only a little uncomfortable...not bad.
The Physician makes a small incision and inserts a large hollow (obviously) needle up to and into the body of the lesion. I felt nothing at all. Samples are taken by inserting a grabber thingy and pulling a trigger. There is an audible pop and a burst of pain. She took 8 samples. I don't know if that's a lot, I didn't ask. I laid on the table and breathed deeply and spoke to the Doctor about Yoga. A passion for both of us. It helped. Still, by the end of the procedure I was done and trembling. Partly from shock and partly from the autonomic effect of the anesthetic.
I don't want to do it again, but if I had to I know it wouldn't kill me. Right now I am on ice...happily.
Lane helped me out to the car. I was followed by knowing, sympathetic glances as I walked through the lobby of the Cancer Center and out the door...but not for long. I have resolved to learn everyone's name. Lori was my xray tech today. Her son is having trouble at school. He's super smart and super bored. My daughter is the same way. I resolved to find her a math tutor in her area.
Tomorrow afternoon we go back for the findings. I have to write down my questions, I won't remember them all. Lane will be there to hear the answers and remember. He said the sweetest thing today. I said "This is not going to be a walk in the park." He answered "No, it's going to be a hike, but I'll be here to carry your pack."
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