Wednesday, April 29, 2009

Did the Affirmations Work? And Other Answers

My foot is not stress fractured and I am overjoyed! It is a pleasure to walk with two feet, however gingerly.

Yes, the affirmations did make a difference. Most side effects have lessened except for neuropathy (nerve damage) in my fingers and toes, causing numbness, tingling, burning.

Otherwise, I have good energy, especially when I pace myself and really listen to my body. Fatigue has not worsened as Dr. DeGreen predicted. I fall asleep faster, don’t always stay asleep, but sleep deep enough that I wake up rested and even skip naps some days.

I do have times of complete ‘brain sludge’ and moments of foggy headedness that feels quite different than absent-mindedness or senior moments, but much less of both this round. Over all, I’ve been able to study, write, teach, be with clients and function much better than I ever thought possible.

My white counts have remained stable and though I’ve caught viruses with the last three rounds of chemo, I’ve never had to delay treatment due to illness or low counts. My throat is much less sore this round and my voice is not as hoarse either. I have no asthma or sinus symptoms this round and am not doing the daily sinus irrigating as before.

I’m aware all of the above could be helped by the other things I’m doing for healing and support, but the real surprise and success of the affirmations is...

…my hair is growing!!

Since I already lost my hair, I did the hair affirmations with much humor. Last week my head itched and felt tender again. I assumed skin and hair follicle damage from Adriamycin, ‘the red devil’, as the nurses and pharmacists call it. The chemical is colorful but my head is not; it’s pale white. Imagine my delight when someone noticed the pale isn’t from pasty-colored scalp skin, but from snow white peach fuzz! The white hairs on my head are definitely growing. Even during chemo! I lost a patch on each eyebrow too, so I quickly checked my face. Sure enough,I see eyebrow stubble. Time will tell how soon my brown/blonde hairs regrow, but this is a fun surprise!

Joyfully, Sharon

Tuesday, April 28, 2009

Bold, Bald, and Pondering

This morning, I get my foot x-rayed again. Pulling a T-shirt over my head wipes off the smear of sweat already glistening on my bald head. It feels like 70 degrees in my bedroom, yet stuffy weather is nothing compared to prednisone withdrawal hot sweats I’ve been tossing in bed with all night. My mirrored reflection shows joy, not irritation; this is the last prednisone sweat I’ll be enduring! I rumple through my Tupperware hat bin; none of my ‘summer’ hats appeal to me, and I shudder at wearing a crocheted one.

“Sassy”, the wig on my dresser, catches my eye. Sassy is lovely. Sassy eased me into baldness and makes me look good under her locks, so why am I staring at the un-sassy, death-white Styrofoam wig head? I feel alive, not a lifeless bald head that needs covering. I want to be comfortable more than acceptable.

I scamper down the steps as fast as hobbling on one crutch allows me to scamper, bald, ear-ringed, feeling powerful. Jay’s mom is driving me to Crossroads Imaging. Before I go out the door, she hovers, asks if I want a hat or my wig. I hesitate, mumbling I’m too hot for a hat, my head itches, and I’m only seeing a technician who already knows I have lymphoma. Jay notices the awkwardness and says “If you want to leave the house bald, go for it!” His kindness ends my hesitation and propels me out the door. Mother smiles and jumps in the car, I have no idea what she really thinks but her silence feels like a gift.

Since I enjoy observing people, my outing becomes more than an exercise in personal freedom. Always curious about human behavior, my own included, I notice responses in me and in others. A man catches a glimpse of my shining white dome and quickly looks at the sidewalk. After he passes though, he looks back. My smiling eyes meet his; he sheepishly turns and hurries on.

Limping through the door of Imaging, I call out a cheery good morning to those inside. The receptionists smile and make eye contact while everyone in the waiting room immediately looks down. I stifle a compassionate grin, remembering how often I’ve done the same. I sit and wait for my turn, feeling everyone’s eyes checking out my head and foot, catching furtive glances when people think I’m not aware. I’m delighted with how little I care about their thoughts of me, not my typical attitude. I do care about them, their curiosity, and humanity. I’d love to laugh and say, stare if you want, ask me questions if you want, I don’t mind.

I’m not writing to make generalizations about human behavior, or to state my wish for greater boldness and less concern with what people think. I’ve never longed to be ‘bald and beautiful’ either. All are appropriate surely, but some other understanding wants to unfold. I’m intrigued knowing I’ve spent much of my life observing rather than participating. My fondness for observing requires blending in, so it’s counter intuitive making scenes or disrupting the status quo. Deeper than my personality quirks is the curious question - do I feel the need to protect people from discomfort, from my bald head, from cancer? In protecting others, am I also protecting myself?

Stepping outside today, bald, beautiful or not, may feel powerful and freeing for me, but it also forces everyone I meet to deal with what they see, to notice their comfort or discomfort, to decide: will I wear my polite mask, the mask that says ‘what you do, who you are, and how you are, doesn’t touch me or affect me’. Isn’t this what we protect ourselves from, really? We just want to get our errands done without interruption, without being affected by another because anything deeper slows us down. It’s a risk being open to self discovery, to another’s joy, sorrow, illness, impracticality, freedom, life or death. The truth is: my very being will always affect others, as will others always affect me. Am I brave enough to notice, to reflect, knowing what I discover may ask me to change, to grow, to love more?

I certainly don’t advocate walking around being open to all; this culture isn’t nearly rested and renewed enough. I don’t think one response can be judged against another. Usually, we are too hard on ourselves and critical of our responses. At the same time, I am sure this elusive quality of openness is highly attractive in our fast-paced, indifferent culture. Being aware helps me be gentle with myself. So, I honor my initial hesitation. And I honor yours if you run into me and my bald head out on the street.

Joyfully,
Sharon

Wednesday, April 22, 2009

No Mo Chemo!!

Woohoooo…six rounds of chemo are finished!

The nurses sang and showered me with confetti while unhooking my IV lines. They surprised me with their funny 'end of chemo' song. One nurse cried when I told her my next goal is to get in shape enough to climb a rock wall. (small rock wall...indoors :) Not sure if I inspired her to tears or if she thought, ‘yeah right’ at the sight of me on crutches, with an IV, and talking about wall climbing. I confess I feel like crap at the moment, with my sprained ankle/foot and headache from the chemo. I can't really fathom climbing a hill let alone a wall, but I need something to motivate me and get me through the final recovery.

I also confess to being discouraged yesterday, despite finishing chemo. I expected to be dismissed from the cancer center with a wave and a hug, leaving all doctors and procedures behind for at least six months, but I have to repeat all the scans in May, see the oncologist in four weeks, plus get another colonoscopy to check out the former tumor site. Boy, I was not prepared to hear all this so it felt like huge disappointment! Almost took the joy out of the last chemo. The procedures seem to never end. I feel like a hamster on a wheel, running on a medical merry-go-round not sure when I can get off.

The oncologist did take me off Vincristine, the drug that causes numb feet, since I fell. I went for x-rays on my foot and there might be two stress fractures. My foot will be re-x-rayed after the swelling/bruising goes down.

All these temporary handicaps remind me of the time I climbed a huge tree. There are two platforms on this tree, a low one and a high one. I’ve always been afraid of heights, but I was determined to climb the tree. The first time I climbed with my husband coaching. With lots of stops and starts I made it to the first platform, while doubting my abilities with every foot hold. I wondered if hubby was getting exasperated with my hesitation and fear.

On the second climb, I went myself. I decide to take snacks, journal, binoculars and heavy coats in case I end up stranded for days fearing to come down. The sheer weight of all my stuff makes the scramble to the first platform quite cumbersome. I sit there joyfully for a long time relishing in my accomplishment and looking at birds through the binoculars. Yet, the higher platform beckons. My soul longs to be up there, but I’m so afraid! I know I have to lighten my load to climb higher but I’m not sure I’m brave enough to risk leaving behind my securities. I hesitate forever, giving myself pep talks, searching for possible foot/hand holds. Suddenly, I see a clear way up. Pumped with new energy I quickly discard my stuff. I lean over the platform, grinning, and drop my extra coat, my hat, my shoes, the backpack of snacks, binoculars, camera and journal. Lighter and barefoot, I climb. There is no thrill like sitting high in a tree, stuff strewn below, wind blowing your hair and the branches under you, except the thrill of knowing you have to get down!

I didn’t last long in my high perch, it was too cold and I had to get down before I chickened out. Success is measured by small victories, so this memory tells me I could climb a small rock wall, just as I got through chemo and will get off the hamster wheel some day.

For now, I feel the disappointment and discouragement, while also finding joy in my supply of books, DVDs, and soup. I can hole up for awhile; the accumulating house dirt isn’t going to kill anyone. Jay brought me seeds from Agway and plants for our tiny garden. I anticipate hobbling out to the garden and planting. The weather reports are calling for the temperature to be in the 80's soon, so I will also sit in the yard and work on my tan.

Joyfully,
Sharon

Tuesday, April 14, 2009

Cheers!

I'm bored and need some good cheer, so I'm rereading my gratitude journal from last year. I found this entry from April 2008:

Today I'm grateful for flowering weeds, a gossamer cloud of delicate white flowers bursting from the brown earth on thread-thin stems, like lacy pins on a cushion. Tiny points of beauty, so breathtaking, so easy to miss.

I smile when stepping over goose, fox and deer droppings as I walk the field lane. How lovely to be reminded I share this space with living creatures fed and nourished by the abundance of this place!

I love God surprises! This morning, when rounding a curve in the field, I saw thousands of tall white flowers lined up along the path, waving as if anticipating my arrival! I waved back, loving them, blessed by their greeting and joy in being alive. I forget plants speak and move every day from dawn to dusk following the path of the sun. I'm grateful the breeze gave the flowers 'words' to shout so I could hear.

I'm intrigued with my husband's excited face as he beckons me out the door. "Hear that? I think it's a chipping sparrow! And, did you see the two new daffodils blooming in the garden?" For a delightful moment he was more 'little boy full of wonder' than grown man; how precious!

I'm grateful for my body, for its ability to lament; I'm sorry it took so long for me to pay attention. Once again I stop and befriend this fragile shell in which my spirit dwells; I work on embracing, rather than wanting it to be less sensitive. I'm grateful for the acupressurist and chiropractor that have helped me this year and for the nutritionist and the medical doctor with whom I have coming appointments.


~~~

I’m surprised how things have changed. I'm glad to be on this side of lymphoma diagnosis and treatment. Yet, I dread Tuesday, the last round of chemo. I'm so close to the end, but impatient for it to be over already!

I want my life back. I'm tired of being on hold, traveling this detour. I don't even smell like myself, I smell like a science lab. No one tells you this in Cancer Patient 101, that the little details matter more than the big ones. Who notices their own smell, or feels
disoriented when it becomes unfamiliar? Books, magazines, cancer centers instruct on attractive ways to cover up a bald head or a medi-port, apply make-up, dress with color and jewelry, but who addresses whether your hubby finds your altered pheromones attractive? I've never doubted Jay's devotion, but I confess fearing my toddler grand daughter would be hesitant to be with me since I look and smell different.

I wonder what will change back and what will remain as is. I wonder if I will worry about cancer screenings in the future. I wonder if I'll be tired for a month after the last chemo. Could the tiredness go on longer? Do I still have fibromyalgia and mixed connective tissue disease, or did I move from illness to health in the last six months? What was healed? How will I be in all the questions? I'm no different than anyone else, healthy or ill. There just are no guarantees, no sure answers. There are only questions, and along with the questions, there is love. Love is the constant.

I have extra time to contemplate the meaning of life, and I'm not referring to cancer recovery. This morning (my good week, even!), I fell down the stairs and bent my foot backwards. I'm forced to sit here with my swollen left ankle elevated, ice-packed. I'm so mad at Vincristine, the chemo drug that causes numb fingers and toes. I'm mad at myself for concentrating so much on gripping the laundry basket that I forgot to be careful how I move my numb feet. I'm mad at Jay for being mad at me for trying to carry the basket downstairs. As I write, I laugh at all the madness.

I've had some wonderful visitors today; my sister dropped off groceries, my neighbors come to see me and we talked about their loved one's recent death from lung cancer. I feel so privileged to be loved, and to love in return, and to simply be present to others.

Cancer or not, swollen ankle or agile foot, good week or chemo week, nothing matters as much as love. Life's meaning is measured by how well I give and receive love.

Joyfully,
Sharon

Wednesday, April 8, 2009

Affirmations

I’m watching old M*A*S*H reruns, eating bowls of soup and rotating the heating pad where ever my bones most need some warmth. As I warm my achy bones, I hope the earth is warming too; the sugar pea seeds I planted still haven’t poked though the ground. While I wait for peas, it’s lovely to watch cherry tomatoes forming in our indoor AreoGarden. I shake the plants regularly to scatter pollen since there are no insects inside to do the work of pollinating.

Unlike the tomato plants needing shaking up, I’m glad my treatment has settled into a predictable routine. Today is day eight, after chemo cycle # 5. This day in past cycles had me laying around in misery, getting through the bone pain rather than enjoying movies and soup while resting. Why am I in less pain? Why was the prednisone withdrawal less intense this time?

I’m sure the joy from my cancer-free status and nearing end of treatment is powering me into new strength and healing. Plus, with each round I get better at knowing how to support myself though the side effects, how to ask for what I need. Yet, something feels new in me, a subtle shift here, a tender growth there, as if some small, precious insects have been pollinating the cherry tomato blossoms within me.

A month ago, Marcus, my supervisor at school, offered to lend me his books on healing from illness, especially cancer. Curious and eagerly, I said yes, but while browsing though the books, I felt much resistance. Why should I reflect on why I got cancer? Why should I make another recording of affirmations according to the authors’ directions when I already did one my own way? I’m so tired of working on my health, my self awareness; besides, cancer already comes with so many ‘shoulds’: should do what the doctor says, should be strong, should be faith-filled and optimistic, should juice veggies, should eat healthy, should take care of myself. I’d freed myself up from needless ‘shoulds’ and didn’t want to guilt myself there again.

Still, I’m intrigued by the importance of recording my own voice using precise, simple statements and listening while falling asleep at night. (As if I’ll fall asleep!) Marcus graciously sent me an email collection of affirmations he helped a friend write during cancer treatments. Using them as a guide, I rewrote, adding some of my own, some from other resources. It felt awkward writing the statements and anticipating the recording process; I’m glad the books say I don’t have to believe the statements I record. Even as I’m drawn to this, skepticism blooms.

Ready, but quite self conscious, I sequester myself in the living room with my tape recorder and script, making Jay promise not to peek in or listen. It takes two attempts to speak soothingly. Marcus cautioned me to speak slowly and soothingly so I’d fall asleep calmly listening rather than jazzed from a voice rushing to get this unpleasantness finished!

Thirty days later, I am smiling over the small changes I’m experiencing. For what it’s worth, I share my list of affirming statements. I share with no point to make, no theological arguments, only with curiosity, humor, doubt and openness. Like the baffling question of Jesus, “Do you want to be healed?” I’m sure one has to be ready for whatever healing work one is drawn toward. I apologize to my sister, Laverne, who told me about similar affirmations back in November, and I only resisted and argued through our conversations. I thought it was all hokey, un-Christian and self-deceptive. Now, I’m edging towards believing the authors when they assure the statements redirect the mind rather than deceive. I don’t care to define healing; I just know I’m ready to live fully whatever length of life is given me, without a need to control any outcomes. I’m also willing to notice the affirmations and statements I resist. My resistance tells me where my subconscious mind could use some redirecting. I notice without judgment, but with humor and self love. (The commentary in parenthesis is my first reactions to the statements while listening and was not part of the recording!)

~ I started the recording by reading a poem and one selection from Psalms for Praying…then on to the following statements~

I am relaxed and at rest
I sleep well (may I laugh?)
My sleep patterns are deep and relaxed (yeah right, I’ll believe when I’m
sleeping!)
My mind is clear (what, no usual absent-mindedness, no present chemo fog?)
I love and approve of myself (more and more, but there are times ….)
My immune system is strong (can I say this? What about autoimmune issues?)
I am strong and healthy (I’m sensitive, allergic, have cancer and autoimmune issues
for Pete’s sake)
My white blood count is strong (yay, this one I like)
I choose to live (yes!)
I think positive thoughts (uh…mostly)
Yes, Jesus, I want to be healed. (yes, I do!)
I do not need side effects. (where did I come up with this one?)
I am relaxed and at rest (wonder if too much repetition defeats the purpose)
My sleep patterns are deep and relaxed
I sleep well
The chemo therapy is my helper
My immune system is strong
The chemo therapy helps my body heal
My white blood count is strong
The chemo therapy attacks the weak and unhealthy cells in my body
My immune system washes out the weak and unhealthy cells in my body
My healthy cells are strong
I have good energy
My immune system protects my hair from the chemo (but, but, I’ve already lost it!)
My immune system protects my mouth and throat
I am relaxed and at rest
My sleep patterns are deep and relaxed
I sleep well
I love and approve of myself
I am beautiful
I love life
Yes, Jesus, I want to be healed.
I do not need side effects.
The breath of Life flows easily through me (hope I don’t get asthma this round)
I joyfully accept life (my middle name isn’t Joy for nothing!)
The world is safe and friendly. (even with war-abuse-earthquakes?)
My mucus membranes are healthy (I’d love not to hurt after chemo!)
My white blood count is strong
The chemo attacks the weak and unhealthy cells in my body
My while blood count is strong
My body is strong
My body is healthy
I release all allergies (I want to believe, God help my unbelief!)
I release fear and resentment.
I love and forgive.
I let others be themselves and I am free.
My whole body is blessed with love.
All parts are beautiful. (my lil old man bald head too?)
I love and approve of myself
I am in total balance. (but, what about prednisone withdrawal?)
My system is in order.
I love life and circulate freely. (I love this!)
The chemo is my helper.
The chemo kills my weak and confused cells
My white blood cells are intelligent and strong (yes, they are! Go whities, go!)
My white blood cells are not damaged by chemo (really?)
The macrophages send the weak and dead cells to my liver and kidneys
My liver and kidneys wash out my weak and dead cells (I love my liver and kidneys!)
My cancer cells are decreasing
My white blood cells are multiplying.
My immune system protects my body.
My immune system protects my digestive system
My appetite is good
Food tastes wonderful! (but after chemo it doesn’t!)
My mucus membranes are healthy
I see good everywhere.
I am fulfilled.
I release the old and welcome the new.
I sleep well at night
I have good energy
I love and approve of myself
I stand in Truth.
I have a deep spirit, love of God, the earth, humanity.
I sleep well at night.
~I ended with a Celtic Blessing and one selection from Psalms for Praying~ (I have yet to hear the end of the tape, so either this is working, or I’m boring myself to sleep! :)

Book Resources:
Getting Well Again, by O. Carl Simonton
The Cancer Conqueror, by Greg Anderson
Peace, Love and Healing, by Bernie S. Siegel
You Can Heal Your Life, by Louise Hay


Quotes:
“If I make such a tape, I’m adding: I am skinny.” my sisters
“Rats, wonder if I can add in the skinny part?” Sharon, thinking.

“The most beautiful experience we can have is the mysterious. It is the fundamental emotion which stands at the cradle of true art and true science. Whoever does not know it and can no longer wonder, no longer marvel, is as good as dead.” Albert Einstein

“Illness and death are not failures. Illness and facing our own mortality can be the catalyst for the kind of profound inner change that allows us to love, often for the first time in our lives.” Dr. Bernie Siegel.

“Living, dying, physical healing, and no physical healing – are not the issue. The ultimate goal for me is to walk and live in the fullness of God’s love, in such a way that it may be a healing for all. To live and to love – nothing more and nothing less. I finally learned this.” Susan, quoted from Siegel’s book Peace, Love, Healing

Joyfully,
Sharon