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.
Saturday, July 23, 2011
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.
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