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.
Subscribe to:
Posts (Atom)