Saturday, January 31, 2009
Holing Up -- 1-31-09
This is recovery week. As expected, I'm not feeling so great. I'm congested, blistery, tongue and throat hurt, swallowing is difficult. Voice is hoarse; talking and eating are not pleasant, but the prednisone makes me hungry, so I am getting calories ingested. My wonderful hubby makes shakes and smoothies that go down well. Meds have prevented thrush so at least I don't have that added misery. I'm tired and want to go into a 'cave' and hide. I told my family they can throw food at me once in awhile but otherwise leave me alone. I have my books, movies, (super bowl commercials :), blankets, heating pad with me so I'll be holing up this weekend.
For the curious, I went to Gail, NAET/acupressurist (similar to acupuncture without the needles) yesterday. She works on my body so it doesn't resist chemo and treat it as an allergen. After chemo last time I had pain along my spine. I thought it was bone pain from the Neulasta shot. It wasn't. Gail said my body's energy meridians get sluggish and painful after traumas like the chemical onslaught, so she touched 'pressure points' all over my body to keep the energy flow going. I lay on a magnetic bed during the treatment and feel so relaxed and mellow, I don't want to get off! Afterwards, she taught me to tap on my collarbone and breast bone to activate my immune system. Perhaps my white count won't drop so low. She also showed me how someone could run their hands down my spine on each side, using light pressure, so the pressure points/meridians remain open. Jay is getting good at doing this; it really alleviates the pain along my spine. I'm utterly grateful as last time I suffered through ten days of pain, thinking it was all bone pain. Now I know it wasn't all from the Neulasta shot.
I'll end with a week of gratitudes, some 'angels' who have deeply blessed me, some wonderful 'red bird' sightings (birds without feathers, that is!). I will not name names because I'll forget someone and that is unbearable to me. You know who you are, dear ones.
...sun rises, sun sets....rosy skies dotted with deep royal blue clouds.
...a completely ordinary day!
...a walk at Overlook rink with a friend
...sunshine, beautiful sunshine!
....painting pottery with all my daughters.
....ham, green beans ...ummmm!
....salad, fresh beautiful, crunchy, gorgeous salad. I crave salad. Not easy to eat with a sore mouth, so I eat with love and careful swallowing.
...snow, white and lovely.
...slipping, but not falling on ice.
...dogs playing in the yard, pouncing on balls.
...a huge box of food delivered with a smile. Spinach, dill mashed potatoes.
Flavor my irritated tongue can taste!
...warm apple pie. The smell alone is divine.
...a card with a red feather enclosed. Tears.
...mystery teddy bear
...dear ones reading to me when I'm too weary to read to myself
...laughter; dear ones who make me laugh.
...cards, lovely, beautiful, funny, loving, absurd, inspirational cards.
...clean house; 'angels' helping me clean
...gift of a cd. Lovely song. More tears.
...finishing my school report. Whew...took more energy than I thought.
...finding new friends who also have cancer.
...a walk at the mall with friends.
...puppy, Teo laying on my legs now, not on my belly; does he know the tumor has shrunk?
...a clothes shop sales woman telling me I looked fabulous with my hat, scarf, matching earrings and shirt. What a shock! Trendy clothes shop sales people never notice me.
...cards from little angels, full of stickers, colors and tape.
... a night of unmedicated sleep.
...dirt on my kitchen floor. Life is going on normally!
...keeping down raw vegetable juice; mixtures of cabbage and parsley and cucumber and celery.
Not your tasty V8.
...one more week of having to take the vile goldenseal and stillingia mixture.
...grateful, oh so grateful ...chemo doesn't taste bad!!
Joyfully,
Sharon
For the curious, I went to Gail, NAET/acupressurist (similar to acupuncture without the needles) yesterday. She works on my body so it doesn't resist chemo and treat it as an allergen. After chemo last time I had pain along my spine. I thought it was bone pain from the Neulasta shot. It wasn't. Gail said my body's energy meridians get sluggish and painful after traumas like the chemical onslaught, so she touched 'pressure points' all over my body to keep the energy flow going. I lay on a magnetic bed during the treatment and feel so relaxed and mellow, I don't want to get off! Afterwards, she taught me to tap on my collarbone and breast bone to activate my immune system. Perhaps my white count won't drop so low. She also showed me how someone could run their hands down my spine on each side, using light pressure, so the pressure points/meridians remain open. Jay is getting good at doing this; it really alleviates the pain along my spine. I'm utterly grateful as last time I suffered through ten days of pain, thinking it was all bone pain. Now I know it wasn't all from the Neulasta shot.
I'll end with a week of gratitudes, some 'angels' who have deeply blessed me, some wonderful 'red bird' sightings (birds without feathers, that is!). I will not name names because I'll forget someone and that is unbearable to me. You know who you are, dear ones.
...sun rises, sun sets....rosy skies dotted with deep royal blue clouds.
...a completely ordinary day!
...a walk at Overlook rink with a friend
...sunshine, beautiful sunshine!
....painting pottery with all my daughters.
....ham, green beans ...ummmm!
....salad, fresh beautiful, crunchy, gorgeous salad. I crave salad. Not easy to eat with a sore mouth, so I eat with love and careful swallowing.
...snow, white and lovely.
...slipping, but not falling on ice.
...dogs playing in the yard, pouncing on balls.
...a huge box of food delivered with a smile. Spinach, dill mashed potatoes.
Flavor my irritated tongue can taste!
...warm apple pie. The smell alone is divine.
...a card with a red feather enclosed. Tears.
...mystery teddy bear
...dear ones reading to me when I'm too weary to read to myself
...laughter; dear ones who make me laugh.
...cards, lovely, beautiful, funny, loving, absurd, inspirational cards.
...clean house; 'angels' helping me clean
...gift of a cd. Lovely song. More tears.
...finishing my school report. Whew...took more energy than I thought.
...finding new friends who also have cancer.
...a walk at the mall with friends.
...puppy, Teo laying on my legs now, not on my belly; does he know the tumor has shrunk?
...a clothes shop sales woman telling me I looked fabulous with my hat, scarf, matching earrings and shirt. What a shock! Trendy clothes shop sales people never notice me.
...cards from little angels, full of stickers, colors and tape.
... a night of unmedicated sleep.
...dirt on my kitchen floor. Life is going on normally!
...keeping down raw vegetable juice; mixtures of cabbage and parsley and cucumber and celery.
Not your tasty V8.
...one more week of having to take the vile goldenseal and stillingia mixture.
...grateful, oh so grateful ...chemo doesn't taste bad!!
Joyfully,
Sharon
Thursday, January 29, 2009
Good and Bad; Love and Suffering
My tongue, throat and hair cells are dying along with the cancer cells. Some good things have to be sacrificed along with the bad things. It reminds me, oddly, of love. When one chooses to live open and unguarded, surrendered to Love, a few walls of defense need to come down.
Like seeing beyond physical beauty. Seeing the spirit glowing rather than the face. Not that I ever thought myself beautiful, but not bad looking did sort of define me. Now, each round of chemo brings lip blisters and angry zits, as if hair loss isn't enough. Looking good is sacrificed in cancer healing. Strangely, I do feel beautiful these days. God's grace carries me even through glances in the mirror.
Love demands I love myself as much as others. Love myself in the process of healing, where I am right now, not love myself when I've become what I want to be, when I'm healed, or when I've arrived, when I'm worthy enough. God loves me right now, where I am in life's process. I am asked to do the same, for myself, for all others. The time for Love is right now, no matter what struggle or glory is happening within or around me.
In October, my spiritual director quoted something that hit a deep chord in me. I remember smiling deeply, just receiving the quote into my soul. I can't remember who said this because I was so touched by the statement: "It is a truly gracious person who wants what they get in life, rather than insisting on getting what they want." Please correct me if I've misquoted, and let me know the author too, if you know. I keep hearing that quote now, and wonder why I smiled so deeply upon first hearing it. I'm astounded more with knowing what was growing unaware in my body then. The longing and desire to be so accepting of life was growing in me along with cancer. Is this how Love grows? Was this God preparing me for what was coming?
I don't believe the quote means passively living with an abuser, or putting up with what should be changed. I believe it means embracing 'what is', that which can't be changed no matter how one stomps feet, yells, fights, denies or runs. God doesn't mind stomping or yelling, I hasten to add. I've yelled at God plenty of times in the past and thrown fist fulls of eggs into the manure pit during periods of anger releasing. I always imagined God clapping and 'egging' me on. God is big enough to embrace my real feelings. Over the years, I've learned God loves when I'm real, when I own my emotions, face them, deal with them in non-violent ways. God becomes real to me in measure of how real I am with God.
No one with any sanity would welcome cancer. Yet the spiritual path brings paradox. Along with bad often comes good. Another quote from school that I love: "To live is to grow. To grow is to change. To change is to suffer." Suffering is bearable when one can open to the gifts hidden within. The first gift I received "AD" (after diagnosis) was sudden clarity about my body, my life, my desires. It's amazing how easily I've been able to separate what matters from what doesn't matter, and how I've learned to trust and let go of more control.
Every day, I'm humbled and encouraged by the outpouring of love offered to me. Countless gifts of time, service, transportation, meals, cards, flowers, pajamas, and so much more, more than I could have ever imagined. Family, friends, church, even strangers are reaching out to me. People I haven't heard from in years are praying for me, sending me cards. It's overwhelming! My soul grapples with deep questions in all this love. Am I truly loved that much? Or is the suffering what deserves this love? Could I get through this without any support, like the countless poor, abused and forgotten? I'm sure I've been stingy with my love, not giving it fully to others, always, whether or not they are suffering or in need of love. I especially wonder if I am open to loving those outside of my community, whether or not they suffer? Are these questions and thoughts of compassion, love for others, or thoughts of my own unworthiness? It is this kind of self awareness, without condemnation, this undefendedness that love asks of me.
The biggest gift in this time of suffering is letting go of more fear. I've carried within me a life long dream of writing for the public, but fear kept my writing hidden. With cancer and chemo, death doesn't seem as far removed, and suddenly I am no longer bound by fear. My writing flows from me as before, because I can't stop writing. But now I share instead of keeping it to myself. I share whether or not any one approves. And, I'm amazed when people do. More amazed when people choose to follow a blog I write!
Speaking of gifts: I received a darling Vermont Teddy Bear in the mail yesterday, from B & R. My family and I scratched our heads for hours last night trying to identify B & R. I'm so sorry for our ignorance! I'd love if the givers would reveal themselves, but if not, I do love a good mystery too! Thank you!
Joyfully,
Sharon
~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"I stand before what is with an open heart and dwell in possibilities."
Macrina Wiederkehr
Equanimity: dictonary says is calm, composure
Jean Halifax's deifinition of equanimity: "the stabitlity of mind that allows us to be present with an open heart no matter how wonderful or difficult conditions are."
"God, help me believe the truth about myself, no matter how beautiful it is." Macrina Wiederkehr
Like seeing beyond physical beauty. Seeing the spirit glowing rather than the face. Not that I ever thought myself beautiful, but not bad looking did sort of define me. Now, each round of chemo brings lip blisters and angry zits, as if hair loss isn't enough. Looking good is sacrificed in cancer healing. Strangely, I do feel beautiful these days. God's grace carries me even through glances in the mirror.
Love demands I love myself as much as others. Love myself in the process of healing, where I am right now, not love myself when I've become what I want to be, when I'm healed, or when I've arrived, when I'm worthy enough. God loves me right now, where I am in life's process. I am asked to do the same, for myself, for all others. The time for Love is right now, no matter what struggle or glory is happening within or around me.
In October, my spiritual director quoted something that hit a deep chord in me. I remember smiling deeply, just receiving the quote into my soul. I can't remember who said this because I was so touched by the statement: "It is a truly gracious person who wants what they get in life, rather than insisting on getting what they want." Please correct me if I've misquoted, and let me know the author too, if you know. I keep hearing that quote now, and wonder why I smiled so deeply upon first hearing it. I'm astounded more with knowing what was growing unaware in my body then. The longing and desire to be so accepting of life was growing in me along with cancer. Is this how Love grows? Was this God preparing me for what was coming?
I don't believe the quote means passively living with an abuser, or putting up with what should be changed. I believe it means embracing 'what is', that which can't be changed no matter how one stomps feet, yells, fights, denies or runs. God doesn't mind stomping or yelling, I hasten to add. I've yelled at God plenty of times in the past and thrown fist fulls of eggs into the manure pit during periods of anger releasing. I always imagined God clapping and 'egging' me on. God is big enough to embrace my real feelings. Over the years, I've learned God loves when I'm real, when I own my emotions, face them, deal with them in non-violent ways. God becomes real to me in measure of how real I am with God.
No one with any sanity would welcome cancer. Yet the spiritual path brings paradox. Along with bad often comes good. Another quote from school that I love: "To live is to grow. To grow is to change. To change is to suffer." Suffering is bearable when one can open to the gifts hidden within. The first gift I received "AD" (after diagnosis) was sudden clarity about my body, my life, my desires. It's amazing how easily I've been able to separate what matters from what doesn't matter, and how I've learned to trust and let go of more control.
Every day, I'm humbled and encouraged by the outpouring of love offered to me. Countless gifts of time, service, transportation, meals, cards, flowers, pajamas, and so much more, more than I could have ever imagined. Family, friends, church, even strangers are reaching out to me. People I haven't heard from in years are praying for me, sending me cards. It's overwhelming! My soul grapples with deep questions in all this love. Am I truly loved that much? Or is the suffering what deserves this love? Could I get through this without any support, like the countless poor, abused and forgotten? I'm sure I've been stingy with my love, not giving it fully to others, always, whether or not they are suffering or in need of love. I especially wonder if I am open to loving those outside of my community, whether or not they suffer? Are these questions and thoughts of compassion, love for others, or thoughts of my own unworthiness? It is this kind of self awareness, without condemnation, this undefendedness that love asks of me.
The biggest gift in this time of suffering is letting go of more fear. I've carried within me a life long dream of writing for the public, but fear kept my writing hidden. With cancer and chemo, death doesn't seem as far removed, and suddenly I am no longer bound by fear. My writing flows from me as before, because I can't stop writing. But now I share instead of keeping it to myself. I share whether or not any one approves. And, I'm amazed when people do. More amazed when people choose to follow a blog I write!
Speaking of gifts: I received a darling Vermont Teddy Bear in the mail yesterday, from B & R. My family and I scratched our heads for hours last night trying to identify B & R. I'm so sorry for our ignorance! I'd love if the givers would reveal themselves, but if not, I do love a good mystery too! Thank you!
Joyfully,
Sharon
~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"I stand before what is with an open heart and dwell in possibilities."
Macrina Wiederkehr
Equanimity: dictonary says is calm, composure
Jean Halifax's deifinition of equanimity: "the stabitlity of mind that allows us to be present with an open heart no matter how wonderful or difficult conditions are."
"God, help me believe the truth about myself, no matter how beautiful it is." Macrina Wiederkehr
Wednesday, January 28, 2009
Two chemo treatments down; four to go!! It took six hours yesterday, another long day. And another 'sledgehammer' dose. With R-CHOP, I get five different support drugs. The combination makes me sleepy, headachey, with dull,watering eyes so I sleep most of the time. The mediport is wonderful! The big port needle gave me pause, but didn't hurt as bad as the skinny needles going in a hand vein. I watched the nurses try to find good veins in the other patients and was very glad I had the port. So much to be grateful for!
Dr Degreen, oncologist, gave me good news and bad news. Good: he could not feel the abdomen tumor anymore. Bad: since there was a gut tumor involved it automatically makes the lymphoma stage 4. So I will get the complete 'sledghammer' for all chemo treatments. The bad news was a downer, until I realized he knew this all along. My reaction was fresh. I settled knowing stage 4 doesn't change the outcome. DeGreen is very confident the chemo will put the cancer into complete remission.
I shouldn't have any new side effects, just more of the same: constipation, sore mouth, tongue and throat, sore scalp, fatigue, bone pain, and low white count. Side effects won't worsen, except for fatigue as this chemo is very hard on the body.
Last night I went to bed early, but had trouble falling asleep. Guess I slept too much during chemo infusion. While laying there, awake, bored, I talked to my body parts. "Wash out the guinea pigs, dear spleen and colon, they want to go!"..."work hard, girls (bladder and kidneys), flush out the chemo." ...."okay all, (stomach, intestines, skin, eyes, throat) let's work together with the chemo so it can do the job, and let's not over react." I blessed my whole digestive tract, trying to ignore the simmering cauldron feel going on inside. I'm prone to fear so every pain, gas bump, gurgle or twizzle tempted me to worry over gastric explosions, tumors and blockages. It didn't help that I watched 'House' last night, an episode of a patient with rupturing spleen and bladder!
Instead of following the fear, I began thanking my body for doing the hard work of moving things along. The gurgles came so often, my thank-you became a non-stop mantra! Then I started to doubt the wisdom of preloading with laxatives. I asked God for "a pinch off the daily loaf", but sometimes I don't trust enough and try to help God along. Of course, I'll be sorry if there's a whole loaf explosion, but I'd rather be yeasty bread boiling over the bowl than a solid lump of dough that just sits there defying one's baking abilities. My image of God used to be so harsh and condemning. I'm grateful I seldom feel condemned in my blunders now; God and I just laugh together a lot. And I do learn from my mistakes.
I finally fell asleep; no explosions woke me up. This morning I still feel plugged, the grumblings are my guts trying to work. I'm eyeing the Milk of Magnesia/Sennecot bottles again. Trust or trust with help? Ah, such a discernment question!!
Whenever I wash my hands and catch a glimpse of myself in the mirror, I see trampy red 'chemo blush' cheeks and bald head. What a sight! I look like a body pumped full of chemicals. Isn't chemo bad enough without the red dye added to one drug? I assume it's dye; can't imagine it comes red naturally. The huge syringe of red did look rather festive, matching the sparkly red Valentine garland wrapped around my IV pole. Doesn't look as festive when peeing red and seeing red. It's like eating 1000 red beets in one day! Knowing my avoidance of food colorings, preservatives and genetically modified foods, I grin at how ironic my treatment is: chemotherapy, complete with red dye and tons of support drugs, immunotherapy with mouse antibodies.
I've always thought of my body as sensitive and allergic. I avoid drugs as much as possible. I used to think I'd rather die than go through chemo. Thinking I didn't have a strong will to live and chemo suffering would be worse than death. Granted, my cancer is highly treatable, and I am profoundly touched by journeys far more serious and difficult than mine, yet my perspective is changing. I have such trust in Dr. DeGreen, in his recommendations. Such gratitude for the positive energy, kind, caring nurses and staff at the Lancaster Cancer Center. I'm surprised at my gratitude in not having time to process my diagnosis, or choose or think about alternative cancer treatments. I felt so carried by God through the tumultuous partial bowel blockage, the diagnosis and fast response by doctors/surgeons in keeping the system moving for me, getting chemo started to avoid bowel surgery. I was simply given an invitation to trust, and I did so instead of being my usual fearful and skeptical. What a gift, meeting so many kind, attentive doctors and non-knife happy surgeons! The only thing I did during that time of trust was say to God, "With your help, I seek and attract kind, excellent medical professionals who will partner with me to heal my body." This experience is changing my view of myself, my body. I am a lot stronger than I thought, body, mind and soul. I am truly 'fearfully and wonderfully' made, a miracle of adaptation and healing. The Intelligence that created the body, heals the body.
On a more contemplative note, I'm glad I learned Centering Prayer and meditation at Kairos school. Meditation was the hardest practice. It seemed so utterly pointless, so counter culture, unproductive and foolish. But after five years of practice I can truthfully say, there is nothing better for me than meditation and contemplative prayer. It has long stopped being a discipline. Such times of quietly opening myself to Life draws me, pulls me toward greater love and joy. I don't have to form words, or produce, or perform. All I have to do is quiet my mind, sit in stillness and open myself to Love, to God, to Christ, to the Creator, the Intelligence of the Cosmos.
While receiving chemo I listened to guided imagery CDs and drifted in and out of sleep, of Centering Prayer. It was lovely feeling so calm, centered, surrounded by love and healing. I could feel all the energy, thoughts and prayers coming my way. I was told by spiritual teachers that students need to learn such disciplines when there are no demands, or big stresses, then when life brings struggle and difficulty, one can lean on already established practices that open the self to grace, to love, to strength and comfort. Of course I didn't quite believe them, especially when struggling to sit still, ignore racing thoughts, itches and tingles, arms or legs falling asleep. At first after five minutes I'd give up in a huff. Gradually, though, I experienced the truth of their teaching. I wouldn't be facing this challenge, with such humor and grace, without those life balancing practices and disciplines. I know my journey is still in the beginning stages, but I trust more than I doubt, so all will be well in my soul, even if not in my body or in the world. Trust me, this statement took a LONG time, and lots of experiences to be able to say!
Joyfully,
Sharon
~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~
"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence. " Helen Keller
Good days give you happiness.
Bad days give you experience.
Both are essential to life. unknown author
Dr Degreen, oncologist, gave me good news and bad news. Good: he could not feel the abdomen tumor anymore. Bad: since there was a gut tumor involved it automatically makes the lymphoma stage 4. So I will get the complete 'sledghammer' for all chemo treatments. The bad news was a downer, until I realized he knew this all along. My reaction was fresh. I settled knowing stage 4 doesn't change the outcome. DeGreen is very confident the chemo will put the cancer into complete remission.
I shouldn't have any new side effects, just more of the same: constipation, sore mouth, tongue and throat, sore scalp, fatigue, bone pain, and low white count. Side effects won't worsen, except for fatigue as this chemo is very hard on the body.
Last night I went to bed early, but had trouble falling asleep. Guess I slept too much during chemo infusion. While laying there, awake, bored, I talked to my body parts. "Wash out the guinea pigs, dear spleen and colon, they want to go!"..."work hard, girls (bladder and kidneys), flush out the chemo." ...."okay all, (stomach, intestines, skin, eyes, throat) let's work together with the chemo so it can do the job, and let's not over react." I blessed my whole digestive tract, trying to ignore the simmering cauldron feel going on inside. I'm prone to fear so every pain, gas bump, gurgle or twizzle tempted me to worry over gastric explosions, tumors and blockages. It didn't help that I watched 'House' last night, an episode of a patient with rupturing spleen and bladder!
Instead of following the fear, I began thanking my body for doing the hard work of moving things along. The gurgles came so often, my thank-you became a non-stop mantra! Then I started to doubt the wisdom of preloading with laxatives. I asked God for "a pinch off the daily loaf", but sometimes I don't trust enough and try to help God along. Of course, I'll be sorry if there's a whole loaf explosion, but I'd rather be yeasty bread boiling over the bowl than a solid lump of dough that just sits there defying one's baking abilities. My image of God used to be so harsh and condemning. I'm grateful I seldom feel condemned in my blunders now; God and I just laugh together a lot. And I do learn from my mistakes.
I finally fell asleep; no explosions woke me up. This morning I still feel plugged, the grumblings are my guts trying to work. I'm eyeing the Milk of Magnesia/Sennecot bottles again. Trust or trust with help? Ah, such a discernment question!!
Whenever I wash my hands and catch a glimpse of myself in the mirror, I see trampy red 'chemo blush' cheeks and bald head. What a sight! I look like a body pumped full of chemicals. Isn't chemo bad enough without the red dye added to one drug? I assume it's dye; can't imagine it comes red naturally. The huge syringe of red did look rather festive, matching the sparkly red Valentine garland wrapped around my IV pole. Doesn't look as festive when peeing red and seeing red. It's like eating 1000 red beets in one day! Knowing my avoidance of food colorings, preservatives and genetically modified foods, I grin at how ironic my treatment is: chemotherapy, complete with red dye and tons of support drugs, immunotherapy with mouse antibodies.
I've always thought of my body as sensitive and allergic. I avoid drugs as much as possible. I used to think I'd rather die than go through chemo. Thinking I didn't have a strong will to live and chemo suffering would be worse than death. Granted, my cancer is highly treatable, and I am profoundly touched by journeys far more serious and difficult than mine, yet my perspective is changing. I have such trust in Dr. DeGreen, in his recommendations. Such gratitude for the positive energy, kind, caring nurses and staff at the Lancaster Cancer Center. I'm surprised at my gratitude in not having time to process my diagnosis, or choose or think about alternative cancer treatments. I felt so carried by God through the tumultuous partial bowel blockage, the diagnosis and fast response by doctors/surgeons in keeping the system moving for me, getting chemo started to avoid bowel surgery. I was simply given an invitation to trust, and I did so instead of being my usual fearful and skeptical. What a gift, meeting so many kind, attentive doctors and non-knife happy surgeons! The only thing I did during that time of trust was say to God, "With your help, I seek and attract kind, excellent medical professionals who will partner with me to heal my body." This experience is changing my view of myself, my body. I am a lot stronger than I thought, body, mind and soul. I am truly 'fearfully and wonderfully' made, a miracle of adaptation and healing. The Intelligence that created the body, heals the body.
On a more contemplative note, I'm glad I learned Centering Prayer and meditation at Kairos school. Meditation was the hardest practice. It seemed so utterly pointless, so counter culture, unproductive and foolish. But after five years of practice I can truthfully say, there is nothing better for me than meditation and contemplative prayer. It has long stopped being a discipline. Such times of quietly opening myself to Life draws me, pulls me toward greater love and joy. I don't have to form words, or produce, or perform. All I have to do is quiet my mind, sit in stillness and open myself to Love, to God, to Christ, to the Creator, the Intelligence of the Cosmos.
While receiving chemo I listened to guided imagery CDs and drifted in and out of sleep, of Centering Prayer. It was lovely feeling so calm, centered, surrounded by love and healing. I could feel all the energy, thoughts and prayers coming my way. I was told by spiritual teachers that students need to learn such disciplines when there are no demands, or big stresses, then when life brings struggle and difficulty, one can lean on already established practices that open the self to grace, to love, to strength and comfort. Of course I didn't quite believe them, especially when struggling to sit still, ignore racing thoughts, itches and tingles, arms or legs falling asleep. At first after five minutes I'd give up in a huff. Gradually, though, I experienced the truth of their teaching. I wouldn't be facing this challenge, with such humor and grace, without those life balancing practices and disciplines. I know my journey is still in the beginning stages, but I trust more than I doubt, so all will be well in my soul, even if not in my body or in the world. Trust me, this statement took a LONG time, and lots of experiences to be able to say!
Joyfully,
Sharon
~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~
"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence. " Helen Keller
Good days give you happiness.
Bad days give you experience.
Both are essential to life. unknown author
"Ask for a 'pinch off the daily loaf.' " (rich) "Huh?" (sharon) "You know, you asked for manna, so this is manna moving." (rich) "Oh!!! That's rich!" (sharon) "I expect you to use it in your blog." (rich)
Tuesday, January 27, 2009
Chemo Day #2 1-27-09
Tuesday, January 27, 2009 Chemo Day #2
I awaken from a deep sleep, rub my eyes, automatically scratch my itchy head, surprised when fingers touch a soft hat instead of hair. I love these moments of precious oblivion! I am not sad when reality hits; rather I smile over the gift of forgetfulness, no longer berating myself for such absent-mindedness.
When reality comes, it comes with a tinge of apprehension, mixed with eagerness and determination. (Let’s get this over with, and say goodbye to more guinea pigs!) Today is Chemo Day. I will see Dr. DeGreen, oncologist, before chemo is started. Will I get to ask all my questions? Will they use my newly installed chest port, with fresh scar and black and blue skin? Since the tumor shrank so fast, will I be given the Ball Peen hammer instead of the Sledgehammer, or if I’m really lucky - Mini-Mite?
I sit by my window awaiting the sun rise, meditating, thinking positive, embracing the day and all it holds. I sip my coffee and eat with reverence, yes oat bran, power pudding, and miralax can be eaten with reverence, being wiser this time to get a jump start on the chemo induced clogging! I know this may be the last food I’ll enjoy without a sore mouth for awhile. And, I pray.
Loving Spirit thanks for comforting me with words from Psalm 67:
Abandoning ourselves into the
Heart of Love,
we need not worry or fret; for
Love’s grace abides wherever we are.
In Love let us make our home.
God of life, Breath of my breath, Christ within me, around me, above me and below me, I come with simple, but specific requests. If a child asks for bread, you will not give them a stone, if a fish, not a snake, so I ask for deep, healing sleep this week, for nourishment, for a ‘pinch off the daily loaf’, -which is manna and movement of manna through me- as my body recovers from chemo. I ask for endurance, patience, Presence, and healing. I ask for the ability to flow around obstacles rather than fight them, just as gently as water in my beloved farm brook flows around rocks and logs. Let me float in the warm water of Love, until I become one with the water.
I will envision the Spirit joining the chemo as it enters my body; together human healing and Divine healing will flow through me companioning, complimenting each other, healing me and protecting tender parts. It will be my second prayer for the day as I abandon myself, with gratitude, into Healing and Love.
Joyfully,
Sharon
Quotes:
I arise at dawn with a winged heart and give things for another day of loving.
-Kahlil Gibran
Isn’t it a splendid thing that there are mornings? - Anne of Green Gables
I thank you God for this most amazing day: for the leaping greenly spirits of trees and for a blue true dream of sky; and for everything which is natural which is infinite which is yes! - e.e. cummings
I awaken from a deep sleep, rub my eyes, automatically scratch my itchy head, surprised when fingers touch a soft hat instead of hair. I love these moments of precious oblivion! I am not sad when reality hits; rather I smile over the gift of forgetfulness, no longer berating myself for such absent-mindedness.
When reality comes, it comes with a tinge of apprehension, mixed with eagerness and determination. (Let’s get this over with, and say goodbye to more guinea pigs!) Today is Chemo Day. I will see Dr. DeGreen, oncologist, before chemo is started. Will I get to ask all my questions? Will they use my newly installed chest port, with fresh scar and black and blue skin? Since the tumor shrank so fast, will I be given the Ball Peen hammer instead of the Sledgehammer, or if I’m really lucky - Mini-Mite?
I sit by my window awaiting the sun rise, meditating, thinking positive, embracing the day and all it holds. I sip my coffee and eat with reverence, yes oat bran, power pudding, and miralax can be eaten with reverence, being wiser this time to get a jump start on the chemo induced clogging! I know this may be the last food I’ll enjoy without a sore mouth for awhile. And, I pray.
Loving Spirit thanks for comforting me with words from Psalm 67:
Abandoning ourselves into the
Heart of Love,
we need not worry or fret; for
Love’s grace abides wherever we are.
In Love let us make our home.
God of life, Breath of my breath, Christ within me, around me, above me and below me, I come with simple, but specific requests. If a child asks for bread, you will not give them a stone, if a fish, not a snake, so I ask for deep, healing sleep this week, for nourishment, for a ‘pinch off the daily loaf’, -which is manna and movement of manna through me- as my body recovers from chemo. I ask for endurance, patience, Presence, and healing. I ask for the ability to flow around obstacles rather than fight them, just as gently as water in my beloved farm brook flows around rocks and logs. Let me float in the warm water of Love, until I become one with the water.
I will envision the Spirit joining the chemo as it enters my body; together human healing and Divine healing will flow through me companioning, complimenting each other, healing me and protecting tender parts. It will be my second prayer for the day as I abandon myself, with gratitude, into Healing and Love.
Joyfully,
Sharon
Quotes:
I arise at dawn with a winged heart and give things for another day of loving.
-Kahlil Gibran
Isn’t it a splendid thing that there are mornings? - Anne of Green Gables
I thank you God for this most amazing day: for the leaping greenly spirits of trees and for a blue true dream of sky; and for everything which is natural which is infinite which is yes! - e.e. cummings
Sunday, January 25, 2009
Guess we both process life through writing
Mom,
I wrote this yesterday, I hope it doesn't make you sad.
Love you,
Steph
January 24, 2009
She asks me to,
I say ‘okay’,
Stand behind, clippers in hand,
Looking at her hair, short but still there.
‘It will feel better when it’s gone’
She says bravely.
I flip the switch,
the clipper hums to life,
A path of stubble left behind,
As the hair falls around her shoulders.
‘Save some pieces’ she says,
I gather them up,
Like precious treasures
And lay them on the table.
My hands smooth her bristly scalp,
Brushing away the loose fuzz.
She smiles through her sadness,
Asks “Do I look awful?”
Dad smiles, says ‘it could be worse.’
I clean up the brown locks on the floor,
Contemplating the new look,
My Mom, shaved bald.
Never had I imagined,
My hands, her hair.
Cancer changes everything.
I wrote this yesterday, I hope it doesn't make you sad.
Love you,
Steph
January 24, 2009
She asks me to,
I say ‘okay’,
Stand behind, clippers in hand,
Looking at her hair, short but still there.
‘It will feel better when it’s gone’
She says bravely.
I flip the switch,
the clipper hums to life,
A path of stubble left behind,
As the hair falls around her shoulders.
‘Save some pieces’ she says,
I gather them up,
Like precious treasures
And lay them on the table.
My hands smooth her bristly scalp,
Brushing away the loose fuzz.
She smiles through her sadness,
Asks “Do I look awful?”
Dad smiles, says ‘it could be worse.’
I clean up the brown locks on the floor,
Contemplating the new look,
My Mom, shaved bald.
Never had I imagined,
My hands, her hair.
Cancer changes everything.
Saturday, January 24, 2009
Bald and Happy Saturday 1-24-09
It’s official. I’m bald now, except for the prick of stubble Stephanie’s clippers left on my head. Jay cheerfully documented the clipping and I almost cried after looking at the digital photos. I did see square this time, maybe not a square head, but definitely a square jaw with more wrinkles than I thought I possessed. The image was a bit much and won’t be publicly shared. Not yet. I’m not THAT brave!
Just when I was starting to like my crew cut, my head began getting sore, waking me up at night, itchy and stinging. My hair was coming out with every shampoo and touch of a comb. It seemed logical to get rid of the hair and soak my head in anti-itch shampoo. I saved the teeny clumps this time. They all fit in a very small plastic container. What a sad, pathetic little pile of hair, like Stephanie clipped a mouse!
Except for black and blue skin over the newly installed mediport, an itchy scalp and a touch of sniffles and asthma, I’ve had a great week, happily visiting family, doing school work, house work, running errands, gratefully and thoroughly enjoying these good days, getting done what needs to be done before chemo on Tuesday. I must add another activity to the list: enjoying EATING again! I also had a follow-up with the GI doc this week. On exam, Dr Lazereth couldn't feel the tumor in my abdomen anymore. The first chemo did a good job! I'm not so afraid to eat and am enjoying salads, rice and beans, whole milks and yogurts. They all taste so extravagant, even decadent. I finally had that Christmas cookie I’ve been waiting for….a huge gluten-free gingerbread man dunked in hot water. Delicious!!
Judy took me to try on wigs at the American Cancer Society center the day after mediport surgery. I was allowed to pick three items. Free! Frugal that I am, even free didn't keep me from dreading the morning. The women at the center were so cheerful and positive; it wasn't as overwhelming as I expected. We had fun! We laughed hysterically at my face under a punk rocker ‘do’, black hair with spikes of blonde and red. After many tries and much laughter, I chose one brown haired wig and two hats. I still want to find a wig that is more my natural hair color: whitish, brownish, blondish. Should be easy with such an accurate description and with showing the wig shop stylist my mouse-sized container of hair bits!
I'm so grateful that I haven't caught any flu bugs, or stomach viruses. I'm grateful for the lovely weather this week, and all the walks in the great outdoors. I'm humbled and grateful for all the love and support of friends and family, even strangers! Cards, gifts, DVDs, meals and visits are still coming. My sisters and their daughters with my five little nieces, nephews and my sweet little grand daughter arrived for a visit yesterday. The kids played at my house. What a joy! Okay, there was a bit of a headache from all the bedlam, but the pleasure was worth the noise.
I do feel incredibly blessed! God is good and all is well in my world. I leave you with a poem I wrote after a brisk walk in our farm fields…
What is lovelier than deep green grasses
frozen in their lushness
against a wide expanse of crystal, luminous snow?
Than a warm, white barn, silver capped silos
against a pale blue sky reflecting the blush of setting sun?
What is bitterer than biting cold
chilling the fingers
invading scarves and hoods, thieving warmth?
Than wearing sunglasses from a beloved, confused
mother, who's oblivious to the transfer of ownership?
What is cozier than a dog curled,
tail around toes
in a fenced-in yard kissed by winter sunshine?
Than a brisk walk down the pasture after being cooped up indoors,
or the delightful song of a grand daughter on your phone?
What is messier than a dog yard strewn with
sleeping mats and soiled bedding straw?
Than depression, or grief, or storms, or the loss of a friend?
Than newly fallen snow pot marked with muddy boot prints,
or a pristine, white winter field spread with dank, smelly cow manure?
What is Alzheimer’s without unconditional love,
death without eternity,
cancer without soup, cards and laughter?
What is love without sacrifice, passion, bafflement, tenderness?
What is God without opulent expressions of created beings?
Just when I was starting to like my crew cut, my head began getting sore, waking me up at night, itchy and stinging. My hair was coming out with every shampoo and touch of a comb. It seemed logical to get rid of the hair and soak my head in anti-itch shampoo. I saved the teeny clumps this time. They all fit in a very small plastic container. What a sad, pathetic little pile of hair, like Stephanie clipped a mouse!
Except for black and blue skin over the newly installed mediport, an itchy scalp and a touch of sniffles and asthma, I’ve had a great week, happily visiting family, doing school work, house work, running errands, gratefully and thoroughly enjoying these good days, getting done what needs to be done before chemo on Tuesday. I must add another activity to the list: enjoying EATING again! I also had a follow-up with the GI doc this week. On exam, Dr Lazereth couldn't feel the tumor in my abdomen anymore. The first chemo did a good job! I'm not so afraid to eat and am enjoying salads, rice and beans, whole milks and yogurts. They all taste so extravagant, even decadent. I finally had that Christmas cookie I’ve been waiting for….a huge gluten-free gingerbread man dunked in hot water. Delicious!!
Judy took me to try on wigs at the American Cancer Society center the day after mediport surgery. I was allowed to pick three items. Free! Frugal that I am, even free didn't keep me from dreading the morning. The women at the center were so cheerful and positive; it wasn't as overwhelming as I expected. We had fun! We laughed hysterically at my face under a punk rocker ‘do’, black hair with spikes of blonde and red. After many tries and much laughter, I chose one brown haired wig and two hats. I still want to find a wig that is more my natural hair color: whitish, brownish, blondish. Should be easy with such an accurate description and with showing the wig shop stylist my mouse-sized container of hair bits!
I'm so grateful that I haven't caught any flu bugs, or stomach viruses. I'm grateful for the lovely weather this week, and all the walks in the great outdoors. I'm humbled and grateful for all the love and support of friends and family, even strangers! Cards, gifts, DVDs, meals and visits are still coming. My sisters and their daughters with my five little nieces, nephews and my sweet little grand daughter arrived for a visit yesterday. The kids played at my house. What a joy! Okay, there was a bit of a headache from all the bedlam, but the pleasure was worth the noise.
I do feel incredibly blessed! God is good and all is well in my world. I leave you with a poem I wrote after a brisk walk in our farm fields…
What is lovelier than deep green grasses
frozen in their lushness
against a wide expanse of crystal, luminous snow?
Than a warm, white barn, silver capped silos
against a pale blue sky reflecting the blush of setting sun?
What is bitterer than biting cold
chilling the fingers
invading scarves and hoods, thieving warmth?
Than wearing sunglasses from a beloved, confused
mother, who's oblivious to the transfer of ownership?
What is cozier than a dog curled,
tail around toes
in a fenced-in yard kissed by winter sunshine?
Than a brisk walk down the pasture after being cooped up indoors,
or the delightful song of a grand daughter on your phone?
What is messier than a dog yard strewn with
sleeping mats and soiled bedding straw?
Than depression, or grief, or storms, or the loss of a friend?
Than newly fallen snow pot marked with muddy boot prints,
or a pristine, white winter field spread with dank, smelly cow manure?
What is Alzheimer’s without unconditional love,
death without eternity,
cancer without soup, cards and laughter?
What is love without sacrifice, passion, bafflement, tenderness?
What is God without opulent expressions of created beings?
Wednesday, January 21, 2009
1-21-09 Grouchy
I'm grouchy today. Woke up irritable, fighting a cold, worrying I'll get sick and the next chemo will be put off. Not that I want chemo, I just don't want delays in the schedule. I foolishly circled the finish date of this round of chemo on my April calendar page. How dumb could I be, setting myself up for inevitable disappointment? I live on a farm, and raised four children for crying out loud! I have cried and protested out loud, many times, over a change in plans. I should know not to count on a calendar date.
Over the last 30 years I've given up luncheons, trips, vacations, told disappointed children - 'the mountains (pool, beach, ___________fill in the blank) will still be there tomorrow, but today the hay can't wait'. I went to family gatherings alone when Jay had to finish combining. I've waited for countless dogs and goats to give birth, adjusted to my dogs instinctive ways of herding the goats rather than insisting on my own cumbersome methods, waited for rain to grow crops and waited for rain to stop so harvest could begin. What makes me think I can suddenly control my chemo schedule? Alas, I can't help myself; I want to make that date in April!
I got the mediport put in yesterday. The procedure went very well. The more I meet Dr. Piepgrass the more impressed I am with his skill and his kindness. Also the Ephrata Hospital staff was fabulous. I wish every one's hospital experiences could be as professional, kind and expedient as mine have been. But this morning I feel like I've been stung by a giant hornet; and the miserable beast left half its body inside mine. There is a round raised lump under my left collar bone. No matter how wonderfully convenient and painless this port will be in time, right now I’m not grateful for it. I'm sick of all that is happening to me; tired of putting up with discomfort of some sort every week.
Life has asked a lot of me lately. I've responded well, I think. But today, even as I look out my window at the stunning sun rise, every cell in my body feels peevish. I've earned one peevish day, I tell God. God smiles through the rose sky, and gently says, "Even if you hadn't, I understand."
Joyfully, and not-so-joyfully,
Sharon
~~
"Remain ever before me,
O Living Presence,
for in You I am safe.
You are my Beloved; in You
and through You
I can do all things." Ps 16 Psalms for Praying by Nan Merrill
"Ummmmmmmmmmmmm" Sharon
"Godiva Chocoiste - milk chocolate pearls with caffe latte” Kim reads the label on the
dainty gold tin box, looking hopeful.
"Okay, you can each have one, but then I'm not sharing." Sharon guarding her precious
gift from Karen
“In case of an emergency, put your head between your knees and kiss your bum goodbye!”
Fletcher, the rat in the movie “Chicken Run”
I'm grouchy today. Woke up irritable, fighting a cold, worrying I'll get sick and the next chemo will be put off. Not that I want chemo, I just don't want delays in the schedule. I foolishly circled the finish date of this round of chemo on my April calendar page. How dumb could I be, setting myself up for inevitable disappointment? I live on a farm, and raised four children for crying out loud! I have cried and protested out loud, many times, over a change in plans. I should know not to count on a calendar date.
Over the last 30 years I've given up luncheons, trips, vacations, told disappointed children - 'the mountains (pool, beach, ___________fill in the blank) will still be there tomorrow, but today the hay can't wait'. I went to family gatherings alone when Jay had to finish combining. I've waited for countless dogs and goats to give birth, adjusted to my dogs instinctive ways of herding the goats rather than insisting on my own cumbersome methods, waited for rain to grow crops and waited for rain to stop so harvest could begin. What makes me think I can suddenly control my chemo schedule? Alas, I can't help myself; I want to make that date in April!
I got the mediport put in yesterday. The procedure went very well. The more I meet Dr. Piepgrass the more impressed I am with his skill and his kindness. Also the Ephrata Hospital staff was fabulous. I wish every one's hospital experiences could be as professional, kind and expedient as mine have been. But this morning I feel like I've been stung by a giant hornet; and the miserable beast left half its body inside mine. There is a round raised lump under my left collar bone. No matter how wonderfully convenient and painless this port will be in time, right now I’m not grateful for it. I'm sick of all that is happening to me; tired of putting up with discomfort of some sort every week.
Life has asked a lot of me lately. I've responded well, I think. But today, even as I look out my window at the stunning sun rise, every cell in my body feels peevish. I've earned one peevish day, I tell God. God smiles through the rose sky, and gently says, "Even if you hadn't, I understand."
Joyfully, and not-so-joyfully,
Sharon
~~
"Remain ever before me,
O Living Presence,
for in You I am safe.
You are my Beloved; in You
and through You
I can do all things." Ps 16 Psalms for Praying by Nan Merrill
"Ummmmmmmmmmmmm" Sharon
"Godiva Chocoiste - milk chocolate pearls with caffe latte” Kim reads the label on the
dainty gold tin box, looking hopeful.
"Okay, you can each have one, but then I'm not sharing." Sharon guarding her precious
gift from Karen
“In case of an emergency, put your head between your knees and kiss your bum goodbye!”
Fletcher, the rat in the movie “Chicken Run”
Monday, January 19, 2009
1-19-09 Lovely Sunrise, Manna, Nasty Tincture
1-19-09 Lovely Sunrise, Manna, Nasty Tincture
6a.m. I sit on my rocking chair, in my indoor sanctuary, surrounded by flowers, peace plant, dish garden, poinsettias, and the soft unfolding sunrise beyond my window. The glow of candle light gently touches the wooden stars lined up on the table beside me. Stars bear the names of loved ones I'm holding with me in this sacred time of stillness. The call of loons, swish of water and the paddle of canoes fill the air as a nature sound CD plays quietly in the background. I feel the spirits of those who hold me in their prayers; we exist within the encircling arms of Sophia Wisdom.
I read this affirmation (slightly adapted by me) from the book You Can Heal Your Life by Louise Hay. "I flow with the changes taking place in my life as best I can. I approve of myself and the way I am changing. Each day gets easier. I rejoice that God is in this rhythm and flow of my ever changing life. Today is a wonderful day. I choose to make it so. All is well in my world."
I also read: "Is there anyone among you who if your child asks for bread you will give them a stone? How much more will God give good things to those who ask?" Matthew 7: 9-11. This verse captured my attention last summer. I have a book for Lectio Divina (form of contemplative prayer) using the words of Jesus. For some reason, I couldn't move on from this verse. Once a week, for the last six months, I'd pray with these words.
I realize 'bread' nourishes us. We need nourishment every day; we need to eat and digest nourishment. As bread moves through us, becomes us, it keeps us alive. Jesus encourages us to ask for nourishment, for what gives us life. Things like good digestion, wisdom, perseverance, a lovely sunrise, Presence of God, insight, courage, friendship, all nourishment for our bodies, minds, souls. I marvel how I was given these words to ponder long before I needed them. Now, I'm prepared to ask for the 'bread' I need. What I need becomes clear, specific, even visceral. Physically, I want my stomach and bowels to function; I ask God for this, knowing God made the body to function well. When chemo turns the contents of my innards into something similar to river stones, I will repeat the assurance given to me: "I will not give you a stone when you ask for bread." Stones are very hard to pass; especially with a tumor in the small bowel!!
I am quite in tune with my digestive system these days; my body prays with me. Mentally and emotionally, I want to choose faith & courage rather than dwell in fear, or 'what if'. I ask for a positive attitude. I list what I'm grateful for each day. When I feel too miserable, I ask God for friends to help me, and for the wisdom to find gratitude. Spiritually, I need love, hope, God. I ask; and God sends me an angelic touch. Bread comes in many forms: a good morning constitutional, a cheery email, a kind nurse, a friend taking me to the doctor, a dog curled up on my belly, a cardinal, gifts of purple pajamas-an inspirational book-warm soup- calming CD, my hubby, Jay, reading Psalms for Praying in the middle of the night when fear wants to visit.
As I lift my eyes to the east, the first light spreads slowly over our barren corn fields. In the dim light, I'm delighted to see snow gently falling. The world outside my window is blanketed with frost. It seems magical, angelic. The large while flakes look like manna falling from heaven. My soul sings with wonder! I laugh with God; I haven't even asked for anything today, yet 'bread' is arriving. Glory be!
8a.m. It's happening. Hair loss. I spike my short bangs preparing to go to the Cancer Center for a blood test and feel something on my fingers. Ten unsightly sprigs of hair stick to the hair wax coating my thumb and finger. Sigh. Just when I am used to my short cut! I think of the bag of hats my sister dropped off last week. Manna.
9:15a.m. The woman on the chair beside me gets blood drawn. She is given a card on which her blood counts are tallied. She says, "It's right on the money'. The nurse laughs, saying, "That sounds like a song!" I grin. I hold out my arm for my turn. The nurse frowns at all the black and blue marks covering up my veins. I shrug, saying "I bleed easy for you." We stifle a laugh. She pricks my skin, no blood. She pushes the needle deeper. When the blood flows she says, "I'll note on your chart - Go deep." We burst out laughing, and start imagining the songs that could be written from comments spoken in this blood lab. Another nurse hands a quiet older gentleman his blood card. "Oh my God," he bellows. "It's blank! Am I dead?" Everyone freezes for a second, then we all join him in a good belly laugh. Manna.
2p.m. I stare at my naturopath/nutritionist's instructions: 1 oz golden seal with 5 drops stillingia tincture in warm water: it will taste awful so drink it fast. Every morning for 10 seconds I strongly dislike my choice to work with Gail. Golden seal is bitter, smells like dirt and stillingia tastes like Vicks. I turn my Celtic Women CD up loud, lean over the sink with the vile cup in my right hand and mug of hot water to quickly dilute the taste in left hand. Right before I gulp, I 'will' my throat and stomach from gagging. The wonderful music helps the disgusting liquid go down. No, that's a lie.
Later, I eat a plate of 1/4c cottage cheese, 1/4 avocado, and five cherries. And, three roasted brussel sprouts. My stomach feels so full I can barely stand the sensation. But, it's great to be eating other foods and not just soup!
Joyfully,
Sharon
Quotes for the day: "I could get run over by a truck today, but I don't spend every waking moment worrying about it." how one cancer survivor stops worrying about a relapse.
"I stand before what is with an open heart and dwell in possibilities." Macrina Wielderkehr
"There is only love,
Love that heals,
Love that sets us free,
There is only love." Elaine Silver
6a.m. I sit on my rocking chair, in my indoor sanctuary, surrounded by flowers, peace plant, dish garden, poinsettias, and the soft unfolding sunrise beyond my window. The glow of candle light gently touches the wooden stars lined up on the table beside me. Stars bear the names of loved ones I'm holding with me in this sacred time of stillness. The call of loons, swish of water and the paddle of canoes fill the air as a nature sound CD plays quietly in the background. I feel the spirits of those who hold me in their prayers; we exist within the encircling arms of Sophia Wisdom.
I read this affirmation (slightly adapted by me) from the book You Can Heal Your Life by Louise Hay. "I flow with the changes taking place in my life as best I can. I approve of myself and the way I am changing. Each day gets easier. I rejoice that God is in this rhythm and flow of my ever changing life. Today is a wonderful day. I choose to make it so. All is well in my world."
I also read: "Is there anyone among you who if your child asks for bread you will give them a stone? How much more will God give good things to those who ask?" Matthew 7: 9-11. This verse captured my attention last summer. I have a book for Lectio Divina (form of contemplative prayer) using the words of Jesus. For some reason, I couldn't move on from this verse. Once a week, for the last six months, I'd pray with these words.
I realize 'bread' nourishes us. We need nourishment every day; we need to eat and digest nourishment. As bread moves through us, becomes us, it keeps us alive. Jesus encourages us to ask for nourishment, for what gives us life. Things like good digestion, wisdom, perseverance, a lovely sunrise, Presence of God, insight, courage, friendship, all nourishment for our bodies, minds, souls. I marvel how I was given these words to ponder long before I needed them. Now, I'm prepared to ask for the 'bread' I need. What I need becomes clear, specific, even visceral. Physically, I want my stomach and bowels to function; I ask God for this, knowing God made the body to function well. When chemo turns the contents of my innards into something similar to river stones, I will repeat the assurance given to me: "I will not give you a stone when you ask for bread." Stones are very hard to pass; especially with a tumor in the small bowel!!
I am quite in tune with my digestive system these days; my body prays with me. Mentally and emotionally, I want to choose faith & courage rather than dwell in fear, or 'what if'. I ask for a positive attitude. I list what I'm grateful for each day. When I feel too miserable, I ask God for friends to help me, and for the wisdom to find gratitude. Spiritually, I need love, hope, God. I ask; and God sends me an angelic touch. Bread comes in many forms: a good morning constitutional, a cheery email, a kind nurse, a friend taking me to the doctor, a dog curled up on my belly, a cardinal, gifts of purple pajamas-an inspirational book-warm soup- calming CD, my hubby, Jay, reading Psalms for Praying in the middle of the night when fear wants to visit.
As I lift my eyes to the east, the first light spreads slowly over our barren corn fields. In the dim light, I'm delighted to see snow gently falling. The world outside my window is blanketed with frost. It seems magical, angelic. The large while flakes look like manna falling from heaven. My soul sings with wonder! I laugh with God; I haven't even asked for anything today, yet 'bread' is arriving. Glory be!
8a.m. It's happening. Hair loss. I spike my short bangs preparing to go to the Cancer Center for a blood test and feel something on my fingers. Ten unsightly sprigs of hair stick to the hair wax coating my thumb and finger. Sigh. Just when I am used to my short cut! I think of the bag of hats my sister dropped off last week. Manna.
9:15a.m. The woman on the chair beside me gets blood drawn. She is given a card on which her blood counts are tallied. She says, "It's right on the money'. The nurse laughs, saying, "That sounds like a song!" I grin. I hold out my arm for my turn. The nurse frowns at all the black and blue marks covering up my veins. I shrug, saying "I bleed easy for you." We stifle a laugh. She pricks my skin, no blood. She pushes the needle deeper. When the blood flows she says, "I'll note on your chart - Go deep." We burst out laughing, and start imagining the songs that could be written from comments spoken in this blood lab. Another nurse hands a quiet older gentleman his blood card. "Oh my God," he bellows. "It's blank! Am I dead?" Everyone freezes for a second, then we all join him in a good belly laugh. Manna.
2p.m. I stare at my naturopath/nutritionist's instructions: 1 oz golden seal with 5 drops stillingia tincture in warm water: it will taste awful so drink it fast. Every morning for 10 seconds I strongly dislike my choice to work with Gail. Golden seal is bitter, smells like dirt and stillingia tastes like Vicks. I turn my Celtic Women CD up loud, lean over the sink with the vile cup in my right hand and mug of hot water to quickly dilute the taste in left hand. Right before I gulp, I 'will' my throat and stomach from gagging. The wonderful music helps the disgusting liquid go down. No, that's a lie.
Later, I eat a plate of 1/4c cottage cheese, 1/4 avocado, and five cherries. And, three roasted brussel sprouts. My stomach feels so full I can barely stand the sensation. But, it's great to be eating other foods and not just soup!
Joyfully,
Sharon
Quotes for the day: "I could get run over by a truck today, but I don't spend every waking moment worrying about it." how one cancer survivor stops worrying about a relapse.
"I stand before what is with an open heart and dwell in possibilities." Macrina Wielderkehr
"There is only love,
Love that heals,
Love that sets us free,
There is only love." Elaine Silver
Sunday, January 18, 2009
Sunday, 1-18-09
I'm feeling great today. No pain, just a touch of fatigue. I share this darker moment with you; easily shared when I'm strong.
Joyfully,
Sharon
Journal entry 1-10-09 (five days after first chemo treatment)
My life flows on in endless song
Amid my body's lamentations,
I hear the sweet though far off hymn
That hails a new creation:
Through all the tumult and the strife
I hear the music ringing;
It finds an echo in my soul—
How can I keep from singing? (Robert Lowery, adapted by Sharon)
With out warning at midnight, in the midst of feeling upbeat and strong, I slid into darkness. An unexpected hole opened up and swallowed me. My mind, my heart, whatever part of me that is too deep for senses fell into a chasm of total obscurity, bewilderment, fear, loneliness. Like a flash of lightening dividing a dark sky, my sky, my hope ripped in two. My world split apart and in that instant, I switched sides, one moment enjoying peace and optimism, next moment cowering in the unknown.
Where am I; how did I get here? Did I stay up to late, tire myself, make myself too physically vulnerable? Am I responsible for this free fall? Why am I suddenly so keenly aware of the throbbing pain in my hand? I look at my hand; feel the pain near my IV site, notice pain moving up my arm. I’m afraid; am I getting nerve damage from all the IVs, or is it an infection? BD, before diagnosis, I trusted my body, my immune system. Now, infections terrify me.
What is my body telling me? There is too much pain. Too much that I’m asked to notice, separate, listen to, or ignore. Nerve pain under my arm from the biopsy incision, is best ignored, a temporary condition after surgery. Is this hand pain also for ignoring? My mind scans my whole body, so much hurt comes into awareness, aching back, sore joints, hurting throat, thick, hairy, aching tongue. My tender insides cry ‘congestion, sluggish’. Are my intestines hinting of another blockage? I remember no bowel movement happened today and worry settles around me like bone-chilling fog. Have I eaten too much, too fast? Am I responsible for this wave of discomfort, despair?
I am abruptly flattened by a tidal wave of clarity. This is my journey; no one can make this journey for me. I am alone in it. I alone will walk it. I know the greeting cards will slowly dwindle, the thoughts and prayers will wane, and life will go on for others in my life, no matter how much they care for me; life for them will go on rather normally, while I will continue to walk this difficult journey. I feel overwhelmed, shy, afraid, bewildered - yet none of these words describe my emotions. I am pure, naked being, vulnerable, weak, like a newborn, dependent, powerless, unable to control or truly know my own body. My body seems a foreigner; sending many mixed messages. I can’t sort them all out. I feel betrayed by my own body! I had begun seeing my body as friend; now I just want to disconnect, disown it.
Another wave of fear rises, crashes over me. What if my mental affirmations, my embracing my cancerous lymph system with love, my loving God and this wonderful planet earth doesn’t make any difference in my healing? I’m appalled at such a thought. Is that why I love so much? Do I hope such loving heals me? Could I still love while surrendering to greater and more complete illness, if that is where my journey goes? Is my love, my prayer, my positive attitude ultimately selfish? Oh my God!
Dear “Em”-Immanuel, my Beloved, my Sweet Sacred Life Giving Spirit, I feel so lost, so naked, exposed, puny, reduced to ulterior motives, unholy. I know little, I sense even less, yet my whole soul longs to be gathered up in Love. For Love alone is my food, my chosen cup, my birthright. Famine, war, dis-ease can not take away Love. No matter what is ahead, I do want to surrender only to Love. God, help me.
Desperate, I pick up a book, Seven Sacred Pauses, by Macrina Wielderkehr and read:
In this sacred darkness
I sit in silence.
Open in this moment, I trust in the darkness.
Waiting in trust, growing in trust.
Waiting and trusting the sacred darkness.
I surrender.
It is truly dark in the room where I sit, dawn is coming too slowly. The candle light is my only hope. How can I possible pray such a prayer? God of my very breath, help me surrender.
Macrina Wielderkehr writes: Take me down deep to the holy darkness of Love's roots. Let me be one with the One I love. Draw me into the depths. Night prayer is deep prayer. Let me go deep. Teach me the art of waiting with patience. That I may grow strong, loving, wise. Let me borrow your eyes, O Beloved. Then I shall see in the dark.
God, thanks for others who write words for me when I have none.
Tiny shards of light are beginning to etch into the dark eastern horizon. How I long for light! My soul cries, each tear feels like a shard cutting away the useless within me. Just as abruptly as the waves of despair, comes a different feeling, a feather soft stroke inside. I sit up, pay attention. Intensely focusing; time stops. There it is again, a warming, a tingling, so subtle, faint. This warmth seems to be waiting, asking. I recognize Peace, Joy, Presence. Come! Beloved Intelligence of the Universe, I’m open and waiting! Tears fall freely now with a deeper knowing that I’ve never been alone. The creator, sustainer, redeemer of the galaxies, the one who dwells in every cell of my being is always with me, crying with me, living through me, experiencing my life with me. The air vibrates, energy swirls around me. I look at the plants I’ve pulled into a circle around me, notice the candle light, the stars and angel figures on the window sill; I feel the rocking chair supporting me, the prayer shawl warm around my neck, the floor under my feet. I am lost in intense vibration and complete stillness, not able to tell where I end and the other begins. We are all one, all vibrating, all alive with the One, and the One is experiencing the world through each. Amazing! Astounding!
In a joyous fog, I think of the song we sing at school, Kairos School of Spiritual Formation, “Christ above me, Christ below me, Christ within me, Christ around me…” The song never made much sense to me.
I’m weeping, soundlessly. I can’t fathom this Intelligence, this God who would so willingly be diminished, a God willing to live and experience life through the eyes and the experience of those who live what they were created to live, surrendered to Love. This kind of Christ shares my sorrow, my anguish and sees the world through my eyes, through all our eyes, the eyes of the loving and hopeful. God shattered God's Self at the creation of the universe, each God-particle crystal being, of love-faith-potential-possibility expanded into the expanse, hovering there, waiting, suspended in the cosmos ready to infiltrate, become one with any and all whose mind and heart is ready to be created, respond to Love. The Christ fragments tingle and vibrate in us, alive, yet subtly, softly waiting for permission to enflame us with knowledge of Spirit. Could it be God's awareness waiting to look out into the world of creation through each being, waiting to set the world on fire with love through those who fan the spark and bring love into full flame? Oh that I could be wholly fire, to allow the Light to burn within me so brightly that even the trees around me also burn! Imagine what the world would be if all become fully alive, living with passion and purpose and possibility! My spirit sings!
Coming easily into normal awareness, I look out the window. There is enough light now to see a dusting of white snow on the walks, yard, some white on the road. No sun rise, the clouds are too thick, sky too gray. I smile, suddenly realizing the darkness did somehow nourish me, quietly, desperately, deeply. I’m grateful for the darkness. I’m grateful for this dawning morning with its quiet beauty. The white, gentle softness is a good break from riotous sunrises of the past week.
I change one of Macrina’s beautiful poems to fit my own experience. I pray she knows my heart and isn’t offended:
I can't see the moon, that golden cradle in the sky;
birds are still quiet.
Dawn's light not enough to awaken the earth.
Silence reigns the world outside my window.
This moment after dawn, new day so untouched,
draws me out of my darkness.
Hope arises with the dawning, the light seeping;
my soul breathes hope at dawn.
I'm feeling great today. No pain, just a touch of fatigue. I share this darker moment with you; easily shared when I'm strong.
Joyfully,
Sharon
Journal entry 1-10-09 (five days after first chemo treatment)
My life flows on in endless song
Amid my body's lamentations,
I hear the sweet though far off hymn
That hails a new creation:
Through all the tumult and the strife
I hear the music ringing;
It finds an echo in my soul—
How can I keep from singing? (Robert Lowery, adapted by Sharon)
With out warning at midnight, in the midst of feeling upbeat and strong, I slid into darkness. An unexpected hole opened up and swallowed me. My mind, my heart, whatever part of me that is too deep for senses fell into a chasm of total obscurity, bewilderment, fear, loneliness. Like a flash of lightening dividing a dark sky, my sky, my hope ripped in two. My world split apart and in that instant, I switched sides, one moment enjoying peace and optimism, next moment cowering in the unknown.
Where am I; how did I get here? Did I stay up to late, tire myself, make myself too physically vulnerable? Am I responsible for this free fall? Why am I suddenly so keenly aware of the throbbing pain in my hand? I look at my hand; feel the pain near my IV site, notice pain moving up my arm. I’m afraid; am I getting nerve damage from all the IVs, or is it an infection? BD, before diagnosis, I trusted my body, my immune system. Now, infections terrify me.
What is my body telling me? There is too much pain. Too much that I’m asked to notice, separate, listen to, or ignore. Nerve pain under my arm from the biopsy incision, is best ignored, a temporary condition after surgery. Is this hand pain also for ignoring? My mind scans my whole body, so much hurt comes into awareness, aching back, sore joints, hurting throat, thick, hairy, aching tongue. My tender insides cry ‘congestion, sluggish’. Are my intestines hinting of another blockage? I remember no bowel movement happened today and worry settles around me like bone-chilling fog. Have I eaten too much, too fast? Am I responsible for this wave of discomfort, despair?
I am abruptly flattened by a tidal wave of clarity. This is my journey; no one can make this journey for me. I am alone in it. I alone will walk it. I know the greeting cards will slowly dwindle, the thoughts and prayers will wane, and life will go on for others in my life, no matter how much they care for me; life for them will go on rather normally, while I will continue to walk this difficult journey. I feel overwhelmed, shy, afraid, bewildered - yet none of these words describe my emotions. I am pure, naked being, vulnerable, weak, like a newborn, dependent, powerless, unable to control or truly know my own body. My body seems a foreigner; sending many mixed messages. I can’t sort them all out. I feel betrayed by my own body! I had begun seeing my body as friend; now I just want to disconnect, disown it.
Another wave of fear rises, crashes over me. What if my mental affirmations, my embracing my cancerous lymph system with love, my loving God and this wonderful planet earth doesn’t make any difference in my healing? I’m appalled at such a thought. Is that why I love so much? Do I hope such loving heals me? Could I still love while surrendering to greater and more complete illness, if that is where my journey goes? Is my love, my prayer, my positive attitude ultimately selfish? Oh my God!
Dear “Em”-Immanuel, my Beloved, my Sweet Sacred Life Giving Spirit, I feel so lost, so naked, exposed, puny, reduced to ulterior motives, unholy. I know little, I sense even less, yet my whole soul longs to be gathered up in Love. For Love alone is my food, my chosen cup, my birthright. Famine, war, dis-ease can not take away Love. No matter what is ahead, I do want to surrender only to Love. God, help me.
Desperate, I pick up a book, Seven Sacred Pauses, by Macrina Wielderkehr and read:
In this sacred darkness
I sit in silence.
Open in this moment, I trust in the darkness.
Waiting in trust, growing in trust.
Waiting and trusting the sacred darkness.
I surrender.
It is truly dark in the room where I sit, dawn is coming too slowly. The candle light is my only hope. How can I possible pray such a prayer? God of my very breath, help me surrender.
Macrina Wielderkehr writes: Take me down deep to the holy darkness of Love's roots. Let me be one with the One I love. Draw me into the depths. Night prayer is deep prayer. Let me go deep. Teach me the art of waiting with patience. That I may grow strong, loving, wise. Let me borrow your eyes, O Beloved. Then I shall see in the dark.
God, thanks for others who write words for me when I have none.
Tiny shards of light are beginning to etch into the dark eastern horizon. How I long for light! My soul cries, each tear feels like a shard cutting away the useless within me. Just as abruptly as the waves of despair, comes a different feeling, a feather soft stroke inside. I sit up, pay attention. Intensely focusing; time stops. There it is again, a warming, a tingling, so subtle, faint. This warmth seems to be waiting, asking. I recognize Peace, Joy, Presence. Come! Beloved Intelligence of the Universe, I’m open and waiting! Tears fall freely now with a deeper knowing that I’ve never been alone. The creator, sustainer, redeemer of the galaxies, the one who dwells in every cell of my being is always with me, crying with me, living through me, experiencing my life with me. The air vibrates, energy swirls around me. I look at the plants I’ve pulled into a circle around me, notice the candle light, the stars and angel figures on the window sill; I feel the rocking chair supporting me, the prayer shawl warm around my neck, the floor under my feet. I am lost in intense vibration and complete stillness, not able to tell where I end and the other begins. We are all one, all vibrating, all alive with the One, and the One is experiencing the world through each. Amazing! Astounding!
In a joyous fog, I think of the song we sing at school, Kairos School of Spiritual Formation, “Christ above me, Christ below me, Christ within me, Christ around me…” The song never made much sense to me.
I’m weeping, soundlessly. I can’t fathom this Intelligence, this God who would so willingly be diminished, a God willing to live and experience life through the eyes and the experience of those who live what they were created to live, surrendered to Love. This kind of Christ shares my sorrow, my anguish and sees the world through my eyes, through all our eyes, the eyes of the loving and hopeful. God shattered God's Self at the creation of the universe, each God-particle crystal being, of love-faith-potential-possibility expanded into the expanse, hovering there, waiting, suspended in the cosmos ready to infiltrate, become one with any and all whose mind and heart is ready to be created, respond to Love. The Christ fragments tingle and vibrate in us, alive, yet subtly, softly waiting for permission to enflame us with knowledge of Spirit. Could it be God's awareness waiting to look out into the world of creation through each being, waiting to set the world on fire with love through those who fan the spark and bring love into full flame? Oh that I could be wholly fire, to allow the Light to burn within me so brightly that even the trees around me also burn! Imagine what the world would be if all become fully alive, living with passion and purpose and possibility! My spirit sings!
Coming easily into normal awareness, I look out the window. There is enough light now to see a dusting of white snow on the walks, yard, some white on the road. No sun rise, the clouds are too thick, sky too gray. I smile, suddenly realizing the darkness did somehow nourish me, quietly, desperately, deeply. I’m grateful for the darkness. I’m grateful for this dawning morning with its quiet beauty. The white, gentle softness is a good break from riotous sunrises of the past week.
I change one of Macrina’s beautiful poems to fit my own experience. I pray she knows my heart and isn’t offended:
I can't see the moon, that golden cradle in the sky;
birds are still quiet.
Dawn's light not enough to awaken the earth.
Silence reigns the world outside my window.
This moment after dawn, new day so untouched,
draws me out of my darkness.
Hope arises with the dawning, the light seeping;
my soul breathes hope at dawn.
Saturday, January 17, 2009
Guinea Pig Dream
Friday, 1-16-09 Guinea Pig Dream
I woke at 4am with a smile. I dreamed I was in a friend's house that had pet guinea pigs. The pigs roamed at will, darting from under sofas, squealing and grunting along the base boards. Piles of guinea pig food pellets and pretzels adorned the kitchen floor. Everything was neat and tidy, except for the mounds of pig edibles. I wasn't exactly appalled, but I was oddly unmoved by her and her pets. Odd, because even in my dream state, I am an animal lover.
In the next dream scene, I saw guinea pigs in a giant tube filled with water. The tube was clear so I could see though it. The pigs were happy, but their eyes beseeched me as they twisted, rolling, crawling over each other, floating through the water swishing and bubbling through the tube. The pigs were huge, curly haired with fat bellies, not drowning or panicking, but I detected some yearning in their dark, round eyes. The tube strained, swelled, stretched to contain them all. I was separate from the pigs, we understood each other, but we weren't buddies. They weren't exactly mine, even though the tube was in my house. Pondering what to do next, I heard a gurgle, looked up and saw the tube open. It began undulating like a long, muscular womb gently plopping out guinea pigs, one by one, until suddenly in a burst of frothy water and energy, guinea pigs exploded from the tube, free, wild, happy. They said good-bye to me and wished me well. I felt light-hearted, free myself.
And then I awoke, grinning. What an odd, silly dream! So vivid! Abruptly, the meaning of the dream dawned on me. The guinea pigs were dying cancer cells moving through the blood and elimination systems of my body, being flushed out. They were my cancer cells and they weren't mine; we understood each other, but we weren't attached to each other. I remember receiving chemo, visionalizing the cancer cells dying, giving up their hold on my body. I had asked my body to work with the chemo, not overreact if possible, but help me eliminate the cancer cells. I visualized my Creator, the Great Spirit, flowing through my veins too, protecting me from too much chemo damage. Now, through this dream, perhaps my body is communicating that it did indeed work with the chemo. I laugh with joy, glad for the dream, glad for the eyes of the guinea pigs in my dream...glad to know they wanted to leave, and went willingly.
5:30 A.M. - I'm busting with eagerness to live this day. What a precious gift, this day, and this vitality I feel. I'm eager to tidy my house, to juice vegetables to feed my body, to welcome a friend I know is coming to visit.
Two days ago, in the middle of lunch, I stopped eating to listen. I thought I heard something, but instead I see the word 'fats' in my mind. Not fats, as in 'you fatty', but rather 'fats-- you need to start eating some good fats.' Since the intestinal tumor raised is guinea piggy head in my small bowel, my body has not been able to digest fat well. So, I totally eliminated fat from my diet. I wonder if my body is crying for some good fats, thus the word in my head. I'm afraid. I'm always afraid to change my diet after a crisis. But, I'm learning to listen to my body. I fill a mug with water, microwave it hot, stir in a smidgeon of coconut oil and add three drops of chocolate raspberry Stevia. I pretend this steaming mug contains rich, succulent coconut hot chocolate! I sip. Nothing explodes or screams or goes into convulsions. So, I drink the cup.
I've been adding smidgeons of non-flavored coconut oil to my coffee, olive oil to my soups. It's going well. Elimination (can I hint about body functions on a blog?) is going much better too. My body seems happy with the added fats.
Kim's new puppy, Teo, loves curling up to sleep on my belly. He always lies on the tumor side. I joked to Kim that Teo is a cancer sniffing dog. Psychologist Carl Rogers says people are wiser than their intellect. I'm suddenly curious. Perhaps my joke was actually an inner knowing. This afternoon, as I puppy-sit for Kim, I hold Teo on my left side. He is unhappy, and stubbornly refuses to relax. I hold him there, scratching his ears, his domed head, he closes his eyes but he won’t relax his body. He refuses to bend his legs. He stands forlornly on my left side. Finally weary, he drops his head on my lap, and still standing, he falls asleep. I feel foolish and cruel. The instant I remove my hand, he leaps up, walks across my belly, turns around three times right on top of the tumor spot, folds up, sighs and falls asleep. My face feels wet; oh good grief, I'm crying!
7p.m. - I'm utterly exhausted. I thought I knew how ‘tired’ felt, but I had absolutely no clue "BD". I had a busy day yesterday too, so perhaps the exhaustion is accumulative. I saw the surgeon, Dr. Piepgrass yesterday. Will get my mediport put in on Tuesday. It will lie under my skin next to the collar bone, which means I'll still have to get stuck by a needle, though the skin, to have blood drawn and chemo injected using the port. Bummer! But a tube sticking out isn't too sexy either, so I'm okay with it. Piepgrass assured me the port stick hurts less than the stick for an IV line. I was tempted to ask him if he knows from experience. I did tell him I’m wimpy about being awake for procedures, and he assured me I wouldn't remember anything.
"So if it really hurts at the moment of cutting, I just won't remember it afterwards?" He grinned.
Dr. Piepgrass is incredibly gentle and kind, an excellent surgeon. The lymph node removal he did on me was superb; the wound healed well with no recovery issues. He is a typical surgeon though, politely waiting for questions, but rather uncomfortable with conversation. Reminds me of a comment Gail Materna said: "Don't forget you are going to be talking to a surgeon. Surgeons interact best with patient when they're unconscious!"
Joyfully,
Sharon
~~
“Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. To these I commit my day. If I succeed, I will give thanks. If I fail, I will seek grace. And then, when this day is done, I will place my head on my pillow and rest.” Max Lucado
I woke at 4am with a smile. I dreamed I was in a friend's house that had pet guinea pigs. The pigs roamed at will, darting from under sofas, squealing and grunting along the base boards. Piles of guinea pig food pellets and pretzels adorned the kitchen floor. Everything was neat and tidy, except for the mounds of pig edibles. I wasn't exactly appalled, but I was oddly unmoved by her and her pets. Odd, because even in my dream state, I am an animal lover.
In the next dream scene, I saw guinea pigs in a giant tube filled with water. The tube was clear so I could see though it. The pigs were happy, but their eyes beseeched me as they twisted, rolling, crawling over each other, floating through the water swishing and bubbling through the tube. The pigs were huge, curly haired with fat bellies, not drowning or panicking, but I detected some yearning in their dark, round eyes. The tube strained, swelled, stretched to contain them all. I was separate from the pigs, we understood each other, but we weren't buddies. They weren't exactly mine, even though the tube was in my house. Pondering what to do next, I heard a gurgle, looked up and saw the tube open. It began undulating like a long, muscular womb gently plopping out guinea pigs, one by one, until suddenly in a burst of frothy water and energy, guinea pigs exploded from the tube, free, wild, happy. They said good-bye to me and wished me well. I felt light-hearted, free myself.
And then I awoke, grinning. What an odd, silly dream! So vivid! Abruptly, the meaning of the dream dawned on me. The guinea pigs were dying cancer cells moving through the blood and elimination systems of my body, being flushed out. They were my cancer cells and they weren't mine; we understood each other, but we weren't attached to each other. I remember receiving chemo, visionalizing the cancer cells dying, giving up their hold on my body. I had asked my body to work with the chemo, not overreact if possible, but help me eliminate the cancer cells. I visualized my Creator, the Great Spirit, flowing through my veins too, protecting me from too much chemo damage. Now, through this dream, perhaps my body is communicating that it did indeed work with the chemo. I laugh with joy, glad for the dream, glad for the eyes of the guinea pigs in my dream...glad to know they wanted to leave, and went willingly.
5:30 A.M. - I'm busting with eagerness to live this day. What a precious gift, this day, and this vitality I feel. I'm eager to tidy my house, to juice vegetables to feed my body, to welcome a friend I know is coming to visit.
Two days ago, in the middle of lunch, I stopped eating to listen. I thought I heard something, but instead I see the word 'fats' in my mind. Not fats, as in 'you fatty', but rather 'fats-- you need to start eating some good fats.' Since the intestinal tumor raised is guinea piggy head in my small bowel, my body has not been able to digest fat well. So, I totally eliminated fat from my diet. I wonder if my body is crying for some good fats, thus the word in my head. I'm afraid. I'm always afraid to change my diet after a crisis. But, I'm learning to listen to my body. I fill a mug with water, microwave it hot, stir in a smidgeon of coconut oil and add three drops of chocolate raspberry Stevia. I pretend this steaming mug contains rich, succulent coconut hot chocolate! I sip. Nothing explodes or screams or goes into convulsions. So, I drink the cup.
I've been adding smidgeons of non-flavored coconut oil to my coffee, olive oil to my soups. It's going well. Elimination (can I hint about body functions on a blog?) is going much better too. My body seems happy with the added fats.
Kim's new puppy, Teo, loves curling up to sleep on my belly. He always lies on the tumor side. I joked to Kim that Teo is a cancer sniffing dog. Psychologist Carl Rogers says people are wiser than their intellect. I'm suddenly curious. Perhaps my joke was actually an inner knowing. This afternoon, as I puppy-sit for Kim, I hold Teo on my left side. He is unhappy, and stubbornly refuses to relax. I hold him there, scratching his ears, his domed head, he closes his eyes but he won’t relax his body. He refuses to bend his legs. He stands forlornly on my left side. Finally weary, he drops his head on my lap, and still standing, he falls asleep. I feel foolish and cruel. The instant I remove my hand, he leaps up, walks across my belly, turns around three times right on top of the tumor spot, folds up, sighs and falls asleep. My face feels wet; oh good grief, I'm crying!
7p.m. - I'm utterly exhausted. I thought I knew how ‘tired’ felt, but I had absolutely no clue "BD". I had a busy day yesterday too, so perhaps the exhaustion is accumulative. I saw the surgeon, Dr. Piepgrass yesterday. Will get my mediport put in on Tuesday. It will lie under my skin next to the collar bone, which means I'll still have to get stuck by a needle, though the skin, to have blood drawn and chemo injected using the port. Bummer! But a tube sticking out isn't too sexy either, so I'm okay with it. Piepgrass assured me the port stick hurts less than the stick for an IV line. I was tempted to ask him if he knows from experience. I did tell him I’m wimpy about being awake for procedures, and he assured me I wouldn't remember anything.
"So if it really hurts at the moment of cutting, I just won't remember it afterwards?" He grinned.
Dr. Piepgrass is incredibly gentle and kind, an excellent surgeon. The lymph node removal he did on me was superb; the wound healed well with no recovery issues. He is a typical surgeon though, politely waiting for questions, but rather uncomfortable with conversation. Reminds me of a comment Gail Materna said: "Don't forget you are going to be talking to a surgeon. Surgeons interact best with patient when they're unconscious!"
Joyfully,
Sharon
~~
“Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. To these I commit my day. If I succeed, I will give thanks. If I fail, I will seek grace. And then, when this day is done, I will place my head on my pillow and rest.” Max Lucado
Friday, January 16, 2009
Wednesday, January 14, 2009
Eight Days After First "R-CHOP"
1-14-09 Eight Days After First "R-CHOP" Chemo Treatment
Isn't 'R-CHOP" an awful acronym? It stands for the chemicals in my chemo cocktail, and it keeps popping into my head at odd moments. When I settle down into my pillow at night there it is, flashing across my mind like a rote childhood prayer. In the middle of a movie, or a good laugh, suddenly I think "R-CHOP". Is it trying to define me, scare me, unsettle me? I have fun with it, turning it into something goofy....like "Really-Cheerful-Healthy-Opulent-Pampering" or "Ratatouille- chop-chop-chop delicious vegetables". But, the silliness doesn't fool me. I know RCHOP really means my life's been chopped in two: BD-before lymphoma diagnosis, and AD-after diagnois.
I discover the only sane way to deal with it is to just accept it for what it is. R-CHOP is a new set of Capitol Letters that will change my life for awhile. I have to remember the 'for awhile' part. My brain is seering these letters into my long term memory because every doctor and care-giver in my life, AD, will want to know about it. I am gentle with myself, as my mind grapples with the significance. The other parts of me: subconscious, body, emotions, psyche, soul are also processing, integrating what my mind says, what my attitude reveals. So, I stop judging chemo harshly. Chemo is like everything else in life; it's both good and bad. Chemo brings healing, remission. If every thing goes as intended, R-CHOP will kill my cancer cells. (Wow, those words hit me like a brick: my cancer cells. ) Chemo kills healthy cells too. Chemo hurts. Chemo messes with my body, but my miraclous body will heal the damage, with the help of the Creator, myself, my nutritionist and others on my team, and with love and support from my dear friends and family. I say this affirmation every day: I am made in God's image, fully deserving a sound and healthy body, mind, spirit. With God's help, I am healing.
Today, eight days after the first round of R-CHOP, I'm having an excellent day! I never want to take a good day for granted again.
This great day followed two days of pain, incredible aching, pulsating bone pain, from belly to toes. Every bone in my back, pelvis and legs felt cold, tender, trampled and weak. Also, two days of a very low white cell count. Two days of feeling utterly vulnerable to infections and germs, staying isolated, washing my hands constantly, afraid to eat raw fruits and vegetables. Two days of complete, helpless misery, then today I woke up refreshed, with NO PAIN. I knew my blood test would be good today. I talked to my bones, and knew they had produced more white cells.
At the Cancer Center my blood test results were miraculously great! Everything was good, not just the white cell count. Who says there aren't miracles happening these days! The nurse thought it was a mistake; perhaphs it's not often white cell counts go from 1.1 to 9.0 in two days! I say to by bones, "THANK YOU....I love you, bones!"
While I was having all that bone pain, I tried to maintain my attitude of gratefulness then too. Can't say I succeeded, unless gratitude is curling up with my heating pad, pitying myself, bargaining with my bones, wishing I had a heating pad big enough to cover my whole body. My bones told me they are doing their job, that people were praying for my white cell count to improve so what did I expect? So, I squeaked out a tiny thank-you to my bones for doing such a good job. But, I didn't thank them for the pain.
After returning home from the center, I stare at the calendar square for today: haircut - 3p.m. On the way home, I rashly decided to just get the hair loss over with and asked Marcie, my stylist, for a buzz cut. But, now I stare at the appointment date and am bombarded with an unexpected onslaught of second thoughts. Am I acting too soon? What if my hair doesn't fall out from chemo? Am I a fool, jumping the gun?
I thought I'd be different. Losing my hair wouldn't be a big deal. Especially not compared to losing my life. I knew I was more than my hair, and since I don't like to primp anyway six months of wearing a hat without bothering to lift a curling iron or hair dryer seemed like a cool vacation. I wasn't keen on finding a hairy clump in my shower drain one day, so why not just do it? I'm unnerved with how shaky I'm feeling, how thoughts drain me. What will people think? Who cares what they think? What if I look awful? Well, you will be bald in a few weeks, so how awful will a buzz be? I don't even have any hats yet; am I crazy? I can't drive. I'm too light-headed. I'll call Jane to come with me. Don't be a fool; Jane won't be able to come at the last minute. Well if she can't then I get the resolve to go myself.
I call Jane. She is kind and gracious, bless her heart. She can't take me, but talking to her grounds me. Sitting in the stylist's chair, I feel confident, sure of my decision, half cocky even. Marcie is great; she's done this for other clients. She knows just want to say, what to advise. We joke around and laugh a lot. Amid the whir and buzz of the clippers, I envision my beautiful head, see myself looking like Rachel, a beautiful friend with a lovely buzzed head. I'm suddenly aware of silence; Marcie holds my glasses out, asks if I'm ready. Still looking down, I notice all the dramatic swirls of white and brown hair nesting on my lap, circling the floor around me, like a hundred tiny woven bird nests. I wish I could collect it and put it out for my bird friends this spring, but I feel shy and don't ask. Slowly I put on my glasses and look up, then laugh out loud. Instead of exotic Rachel, I see my father's big ears. I look like my brother! My head is egg shaped! I can't stop being astounded; after a lifetime of seeing 'square' on top of my neck, I have an egg-shaped head. Oh my! I like surprises, I think.
I feel strange, half naked, half exposed, yet oddly connected, carried. There is nothing to distract me from my inner self; an almost bald head reveals my eyes, my soul shines through. I am human, flawed, yet I am beautiful. I shine with Spirit. I thank God for all those who prayed for me, the last two days, when I was too miserable to pray myself.
Grace and Love,
Sharon
~~~ -- ~~~
Matthew 10: 26-31
So have no fear of them; for nothing is covered up that will not be uncovered, and nothing secret that will not become known. What I say to you in the dark, tell in the light; and what you hear whispered, proclaim from the housetops. Do not fear those who kill the body but cannot kill the soul; rather fear him who can destroy both soul and body. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground unperceived by God. And even the hairs of your head are all counted. So do not be afraid; you are of more value than many sparrows.
Ps 139 - Psalms for Praying, by Nan Merrill
O my Beloved, you have searched me and known me!
You know when I sit down and when I rise up;
You discern my inner most thoughts.
You find me on the journey and guide my steps;
You know my strenghts and my weaknesses.
Even before words rise up in prayer,
Lo, you have already heard my heart call.
You encompass me with love where'er I go,
your strenth is my sheild.
Such sensitivity is too wonderful for me;
it is high, boundless gratitude
is my soul's response.
Isn't 'R-CHOP" an awful acronym? It stands for the chemicals in my chemo cocktail, and it keeps popping into my head at odd moments. When I settle down into my pillow at night there it is, flashing across my mind like a rote childhood prayer. In the middle of a movie, or a good laugh, suddenly I think "R-CHOP". Is it trying to define me, scare me, unsettle me? I have fun with it, turning it into something goofy....like "Really-Cheerful-Healthy-Opulent-Pampering" or "Ratatouille- chop-chop-chop delicious vegetables". But, the silliness doesn't fool me. I know RCHOP really means my life's been chopped in two: BD-before lymphoma diagnosis, and AD-after diagnois.
I discover the only sane way to deal with it is to just accept it for what it is. R-CHOP is a new set of Capitol Letters that will change my life for awhile. I have to remember the 'for awhile' part. My brain is seering these letters into my long term memory because every doctor and care-giver in my life, AD, will want to know about it. I am gentle with myself, as my mind grapples with the significance. The other parts of me: subconscious, body, emotions, psyche, soul are also processing, integrating what my mind says, what my attitude reveals. So, I stop judging chemo harshly. Chemo is like everything else in life; it's both good and bad. Chemo brings healing, remission. If every thing goes as intended, R-CHOP will kill my cancer cells. (Wow, those words hit me like a brick: my cancer cells. ) Chemo kills healthy cells too. Chemo hurts. Chemo messes with my body, but my miraclous body will heal the damage, with the help of the Creator, myself, my nutritionist and others on my team, and with love and support from my dear friends and family. I say this affirmation every day: I am made in God's image, fully deserving a sound and healthy body, mind, spirit. With God's help, I am healing.
Today, eight days after the first round of R-CHOP, I'm having an excellent day! I never want to take a good day for granted again.
This great day followed two days of pain, incredible aching, pulsating bone pain, from belly to toes. Every bone in my back, pelvis and legs felt cold, tender, trampled and weak. Also, two days of a very low white cell count. Two days of feeling utterly vulnerable to infections and germs, staying isolated, washing my hands constantly, afraid to eat raw fruits and vegetables. Two days of complete, helpless misery, then today I woke up refreshed, with NO PAIN. I knew my blood test would be good today. I talked to my bones, and knew they had produced more white cells.
At the Cancer Center my blood test results were miraculously great! Everything was good, not just the white cell count. Who says there aren't miracles happening these days! The nurse thought it was a mistake; perhaphs it's not often white cell counts go from 1.1 to 9.0 in two days! I say to by bones, "THANK YOU....I love you, bones!"
While I was having all that bone pain, I tried to maintain my attitude of gratefulness then too. Can't say I succeeded, unless gratitude is curling up with my heating pad, pitying myself, bargaining with my bones, wishing I had a heating pad big enough to cover my whole body. My bones told me they are doing their job, that people were praying for my white cell count to improve so what did I expect? So, I squeaked out a tiny thank-you to my bones for doing such a good job. But, I didn't thank them for the pain.
After returning home from the center, I stare at the calendar square for today: haircut - 3p.m. On the way home, I rashly decided to just get the hair loss over with and asked Marcie, my stylist, for a buzz cut. But, now I stare at the appointment date and am bombarded with an unexpected onslaught of second thoughts. Am I acting too soon? What if my hair doesn't fall out from chemo? Am I a fool, jumping the gun?
I thought I'd be different. Losing my hair wouldn't be a big deal. Especially not compared to losing my life. I knew I was more than my hair, and since I don't like to primp anyway six months of wearing a hat without bothering to lift a curling iron or hair dryer seemed like a cool vacation. I wasn't keen on finding a hairy clump in my shower drain one day, so why not just do it? I'm unnerved with how shaky I'm feeling, how thoughts drain me. What will people think? Who cares what they think? What if I look awful? Well, you will be bald in a few weeks, so how awful will a buzz be? I don't even have any hats yet; am I crazy? I can't drive. I'm too light-headed. I'll call Jane to come with me. Don't be a fool; Jane won't be able to come at the last minute. Well if she can't then I get the resolve to go myself.
I call Jane. She is kind and gracious, bless her heart. She can't take me, but talking to her grounds me. Sitting in the stylist's chair, I feel confident, sure of my decision, half cocky even. Marcie is great; she's done this for other clients. She knows just want to say, what to advise. We joke around and laugh a lot. Amid the whir and buzz of the clippers, I envision my beautiful head, see myself looking like Rachel, a beautiful friend with a lovely buzzed head. I'm suddenly aware of silence; Marcie holds my glasses out, asks if I'm ready. Still looking down, I notice all the dramatic swirls of white and brown hair nesting on my lap, circling the floor around me, like a hundred tiny woven bird nests. I wish I could collect it and put it out for my bird friends this spring, but I feel shy and don't ask. Slowly I put on my glasses and look up, then laugh out loud. Instead of exotic Rachel, I see my father's big ears. I look like my brother! My head is egg shaped! I can't stop being astounded; after a lifetime of seeing 'square' on top of my neck, I have an egg-shaped head. Oh my! I like surprises, I think.
I feel strange, half naked, half exposed, yet oddly connected, carried. There is nothing to distract me from my inner self; an almost bald head reveals my eyes, my soul shines through. I am human, flawed, yet I am beautiful. I shine with Spirit. I thank God for all those who prayed for me, the last two days, when I was too miserable to pray myself.
Grace and Love,
Sharon
~~~ -- ~~~
Matthew 10: 26-31
So have no fear of them; for nothing is covered up that will not be uncovered, and nothing secret that will not become known. What I say to you in the dark, tell in the light; and what you hear whispered, proclaim from the housetops. Do not fear those who kill the body but cannot kill the soul; rather fear him who can destroy both soul and body. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground unperceived by God. And even the hairs of your head are all counted. So do not be afraid; you are of more value than many sparrows.
Ps 139 - Psalms for Praying, by Nan Merrill
O my Beloved, you have searched me and known me!
You know when I sit down and when I rise up;
You discern my inner most thoughts.
You find me on the journey and guide my steps;
You know my strenghts and my weaknesses.
Even before words rise up in prayer,
Lo, you have already heard my heart call.
You encompass me with love where'er I go,
your strenth is my sheild.
Such sensitivity is too wonderful for me;
it is high, boundless gratitude
is my soul's response.
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