Becoming Bardic

Cancer has given me the opportunity to re-invent life. I've always wanted to write fiction. It used to be that people understood when an argument was well-made and would be persuaded by reason. Not any more. Now people need a story. They are persuaded by personal connection and emotion. They need a bard, not a lawyer.

I've had fun this spring and summer working on the lyrics for my second daughter's musical tribute to American service men and women. See the progress on the project at 21 Gun Salute. In the course of researching for the lyrics, I've been able to interview some wonderful vets, read some fascinating military bios and even some heart-stopping poetry penned by our warriors and their families. Now I'm ready to tell other sorts of stories.

Trying to decide which to write first.
The mystery: A Levite detective in an ancient city of refuge must find the real human trafficking culprits before they dissolve King David's precarious reign into civil war.
The fantasy: Renowned inventor Daedelus discovers that his inventions for sinister King Minos have destabilized both the foundations of Atlantis and his own son's sanity.
The action-thriller: In an America groaning under an oppressive regime, a young man is drawn into a web of intrigue when he begins to find in his geo-caches messages from his dead mother.

What would you most like to read?

Frankenstein and the Illustrated Woman

Well, radiation has been a funny thing. It has changed my perspective on a couple of deeply-held prejudices. Take tattoos. I always swore I'd never have a tattoo. But I'm coming out of radiation with not one but FOUR. OK, they are in places that never see the sun and the radiation techs use them to line me up in the laser grid so that I get blasted in the right place every time. So I'm not exactly the Illustrated Woman. Still, the tech who gave me my first tattoo swears it is a butterfly. I can't see it myself - really - I'll have to take his word for it.

And then there is the idea that modern science has done away with the old Frankenstein lab model. Every day, I climb onto a completely flat, completely rigid table which lifts me up through a laser grid somewhere near the ceiling into the mechanical embrace of this slowly spinnable robot armed with every kind and speed of lightning. Stacked all around the edges of the lab are weird impressions of life-sized body parts. Some pressed into distressed plastic molds. Others just suggested by Lucite curves: put your elbow here, grab this post and drape your neck over this roll. The creepiest ones are mesh busts that fit over the head like the Man in the Iron Mask.

Instead of crowing, "It's aliiiive!" every morning, the techs chirpily tell you to lie absolutely still. One day I had a cough, so I was sucking on a cough lozenge. My tech asked if I could stop moving so much. Not the coughing - the sucking. Catch 22! Luckily, they have a high-tech device to help prevent you from feeling like you're going to fall right off their little bench: the toe rubber band. I am not kidding! Before your head locks down into its mold, the techs have your toes tucked into this industrial strength rubber band. Actually, that's the most comfortable part of radiation.

I am happy to report that I have taken my last trip on that Frankensteinian elevator! I have had only minor blistering, which is already beginning to heal. The much-feared fatigue is just now rolling in. Sort of a delayed reaction. I have trouble getting out of bed in the morning, and trouble staying awake when I do. My physical therapist tells me that I should expect some relief on that front in about two weeks - maybe a month. Resuming my exercise regimen next week should help.

Meanwhile, our Lord and my children are making sure that I have plenty of reasons to get up in the morning. I am directing the dramatization of Mendelsohnn's Elijah at church next week. (Check it out here! ) Petra has been back and forth between here and Stockton, working with me on the libretto for her musical tribute to American servicemen and women, 21 Gun Salute. Chloe graduated from DU with great fanfare, and is moving to LA next week to pursue a post-graduate program out of Pepperdine University in film producing. Robert will soon finish his Eagle Scout rank, and is working on his lines (sometimes with me) for Petruccio in Shakespeare's Taming of the Shrew.

It's good to remember that when our capacity for enduring pain is expanded, so is our capacity for entering into joy.

Inventory

These days when people ask me how I feel, I have to stop and take inventory. It's that already-but-not-yet thing. Already better, but not yet well. I am glad to report that the chemo toxins are noticeably decreasing, although not in a straight line. I no longer have to steam my eyes open every morning, even though my eyes still sting and water. My hands and face only burn in the evenings, and they never peel. And there is a sort of peach fuzz on top of my head. On the other hand, my fingernails are falling off.

Radiation has begun, and is much easier to tolerate than chemo. I have only had a couple of days when I felt so exhausted that I thought I couldn't move – and that didn't last all day. Though it was kinda spectacular when I fell asleep at work – during a phone call. Luckily my boss laughed.

Those episodes have been a merciful indicator of things to come. At church, I am working on a production of Mendelssohn's Elijah, which is going up in mid-June near the end of the radiation treatment. Now I understand what it means that I will experience a debilitating level of weariness most of the time. So I'm able to view my work on Elijah as more of an exercise in equipping others and less of an opportunity to direct.

This weekend, the Lord surprised me with a scholarship to the Christian Writers’ Conference in Estes Park. Respite, fellowship and hope for future usefulness! His kindness and your continued prayer strengthen me for this last nasty phase of treatment.

Burning Questions

So I've just completed the last cycle of the bad-boy chemo drugs. I'm looking forward now to a week of getting ahead of the damage they have done to healthy tissues as well as cancerous ones. My naturopath said this week that it's the patients who feel the effects of chemo the most who seem to have the lowest recurrence rates. I certainly hope he's right in my case!

Tomorrow, I'll begin the Herceptin and Avastin infusions alone. They aren't the ones causing all the awful side effects. And I don't have to prepare for them with a several-day fast. The Monday after that, I'll begin radiation - every day for 6 - 7 weeks.

So the burning questions are: How will that hit me - will I tan, burn or glow in the dark? Will I lose ALL my fingernails in the wake of chemo? How soon will there be life after naptime? and...(cheesy organ chord)did all this work?

Really, only time will tell.

So today, I'm celebrating the no-fasting zone by having dinner at the Olive Garden.

The Joy of Eyebrows

I never really appreciated eyebrows properly til now. They let you know where your face begins and they punctuate your expressions. I'm glad I've still got mine - mostly.

On Monday, I had my last really toxic chemo! Like eyebrows, it marks the place where I can expect healing to begin. I will continue to have infusions every three weeks of herceptin and the experimental drug avastin, but they don't carry the toxic wallop of the full chemo treatment I've been getting.

Thank you for your prayers. I had no emergencies at this treatment. And while my face is burning, most people think I've just been out in the beautiful spring sunshine. It reminds me not to celebrate quite yet. I will still need to expect the full round of difficulties for the next three weeks. Then I can begin to make real headway against the damage done to my healthy systems by the chemo.

I will see the radiation oncologist in mid-April and find out what that regimen will entail.

Tantrums

I'm so grateful for a bit of a respite in last chemo cycle! This time my body has figured out new and sinister ways to demonstrate its total rejection of these toxins.

I had been looking forward to a full day of conversation and writing with Petra during the infusions, but while I was soaking in the ice water, the rest of my body broke out in a rash. The doctor responded with a massive dose of Benadryl. So much for conversation – though I think I remember saying some Mad Hatter-ish things as I dozed off. I was especially glad that Petra was with me, though, I would have had to call someone to drive me home.

Yesterday, my face went up like a torch and I spent most of the day wearing ice packs. Today, I'm able to get along with aloes alone, though I look like Godzilla. And then there is the amazing nausea. I have great nausea meds, but they all make me sleepy.

None of this has happened before in this way, so it's clear that it's a whole new world this cycle. I have no real idea what to expect. But there are a number of things that won't change: the loving support of all of you, my determination to find new opportunities in my situation, and the mysterious purposes of God.

Laughing

Closing in on the next to last chemo (cheers!). I will begin the pre-chemo fast on Saturday, and will have the infusion on Monday. My energy level is sustained much better during the fast now that I am drinking Kangen water.

In fact everything has been so much more bearable this cycle since they reduced the dosage of the most toxic drug. Sure, my eyes still water & sting and my hands and feet feel sandpapered...and I often feel after eating that I'd rather return dinner than digest it. But everything has ratcheted down a notch. It's been suffering more on the level of having a bad case of the flu – so ordinary that I have been unable to find anything to mock. (Or maybe it's that chemo-brain has finally set in and prevents me from seeing things creatively...Ack!)

So instead, I thank God for a bit of respite, and for the end being in sight. Petra will be home on Spring Break for this chemo treatment, and we are planning to spend the time writing the libretto for her musical tribute to America's soldiers. Friends and relations have not forgotten to encourage me with cards, meals, flowers and kindness through this long, long distress. Every day something more to thank God for.

Robert reminded me the other day that God's laughter scatters and destroys His enemies. He is not laughing because they are destroyed, but they cannot stand before His mighty mirth. So it is not so much my laughter that matters, though it may dimly reflect His in its power to quell my nausea. May God enjoy the deep comedy in my situation and may His laughter scatter all His enemies here. May none of my dear ones be among them.

_____________________________________________________________

Thanks to mrldust.wordpress.com/2009/02/ for the funny photo.

Chemo #4 Saved by the Belles

I hadn't realized how discouraged I have been over the last chemo cycle until I tried to get ready to go to chemo this time. It was like getting a squalling 4 year old to settle down for the dentist. Finally, I had to call in the big guns: my mom AND my sister. They came to take me in and stayed to distract me with a scrapbooking project. Good thing, too, I really don't know if I could have frog-marched myself in for another round of dreadful.

My doctor was sympathetic, looking over all the difficulties of the past three cycles. She agreed to reduce the dosage of the worst chemo drug. And I soaked again in the icy water during that infusion. I'm also trying a regimen of drinking ionized, alkaline water that is a standard of care in Japan.

So far the worst symptom I've suffered this cycle is a short visual migraine. We are only two days into the cycle, so I'm still on alert for the next version of ick, but I'm grateful for no burning in the hands and feet and no infections elsewhere.

Did you ever notice how often David says in the Psalms, "I will sing", "I will give praise"? It's not "Isn't life grand? I feel like singing!" Looking at David's life, I notice that he had sad, hard times more often than not. His marvelous praises were more an act of will than a bubbly high-five. I'm there. I will give praise, even though I can't manage the sparkle.

Revenge of the Toxins

While I continue to be daily grateful for almost pain-free hands and feet, the chemo toxins are having their revenge in new mischief. This round,they have hammered my mucus membranes, burning eyes, sinus, and digestive tract. I have contracted infections in sinus and urinary tracts. I am stumbling around like the Mummy, shedding the seared remnants of skin cooked in the last round, honking inarticulately, eyes too filled with rheumy tears to see where I'm going. Plus, I always look embarrassed; the burning is happening on my face.

I think I really scared the guy standing behind me in the grocery line. He happened to catch sight of my face under my hat brim as I turned to collect bags. He jumped back like a guilty three-year-old. Robert, who had very prudently driven, brazened it out, grinning at the guy as he took my load and escorted me to the car. Gotta love that boy!

To console myself, I am holing up (as much as possible)to draft that Great American Novel I've always wanted to write, as well as assisting Petra with the libretto for her musical tribute to the American soldier. Good times. The spirit is not fettered; it will take its own revenge.

Seeking True North

When I started chemo, several friends who have survived cancer advised, "When you begin to lose your hair, just take charge and shave it all off. You need to have some way to take control." I liked that idea. Me over cancer. Me wryly living that dream all of us women have embraced on some dark bad-hair day of simply shaving it off and starting over. I'm a take-charge kinda gal.

But when the hair began to fall in sheets and clumps, I knew there was something else I needed to affirm. I have cancer because God is in charge, not me. All the things I have taken charge of have been taken from me - at least for a time - because I need to remember that truly I am NOT in charge. And however it looks from here and now, that is a good thing. So I needed something to remind me that I will seek God's direction and be still under His guidance.

No, I didn't shave. I tried to enjoy the emotional satisfaction of actually being able to tear my hair out when things got intense. But it wasn't fun enough. I knew I was just waiting in a trackless darkness for God to...do something.

Then Richard Fudge's Visual Prayer Journal project came across my radar through the Creative Edge Artist's Network. He and God arranged for the Journal to reach me during my most discouraged cancer time so far. Designing a page that reflects my determination to wait on God's direction helped me come to terms with the feelings of helplessness, and to frame my prayer for His will to be done in and through me.

The background is a map of the Arctic Ocean sea floor, the darkest, most trackless place on Earth, a place where even a compass is useless. As the tsunami of troubles obliterates all known landmarks, God's Will is the only true north my heart will seek.

Photo is True North by Kim Anderson, 2010. Click on photo for a larger view.

Cold Comfort & Warm Hearts

As you know, I particularly dreaded this chemo round. So God's comfort began before treatment on Sunday. Our church had a special Ascent service, a modern hymns movement concert and worship service that included communion, foot-washing, healing anointing and prayer. The music was beautifully done and encouraged vocal improvisation that I really enjoy. Then the music took a more contemplative turn as worshipers were invited to the ministries at the sides of the sanctuary. It is distressing to me when I am too sick to come to communion, so this was His gracious banquet to strengthen me. The prayer warrior I spoke with for prayer knew my general illness, but not the details. Unusually, she anointed my hands with oil, not my head. Coincidence? I thought it was all over, but an old friend pulled me aside and wanted to wash my feet, "because she loves me". It was an astonishing revelation of the Body of Christ. Some fed the spirit, some the heart and some...comforted the poor broken places they didn't even know they touched.

Chemo #3 yesterday began rather discouragingly, when the nurses had trouble accessing my port. The port is a surgically-implanted catheter into a major artery, giving access with minimum damage to veins to all the infusions I'll need plus allowing all the blood samples to be collected easily and with a minimum number of stabs. The tubing inside had gotten both kinked and clogged at the end. The nurses were creative and patient, but they still had to draw blood at another site. The good news is that they got it working for the chemo infusions - so no damage to peripheral veins. This could become a real problem, since this port should serve me for a whole year.

This time, I tried my naturopath's latest suggestion for minimizing the debilitating burning in my hands & feet. While I was taking the bad-boy chemo infusion, I immersed my hands and feet in icy water. This constricts the blood flow, limiting the amount of taxotere that is delivered to the afflicted areas.

I had a bit of swelling & burning in my hands last night, so I thought it hadn't worked. But I took some Apis (made from bee venom - go figure), and by morning, all the swelling & burning was gone. So maybe we have this under control. I will know for sure some time around Wednesday.

Meanwhile the "Merry Maids" from church came to make my house feel like home again. Not only did they clean it top to bottom, changing sheets and towels, but they left a fragrant soup in the crock pot, and my favorite flowers smiling out of surprising nooks throughout the house. Best of all, they left the benediction of their special prayers in all the living areas.

Mom & Dad completely rearranged their lives to schlep me around town in case I should be too dizzy after chemo to be a safe driver, and then to be with me overnight as well. My cup runneth over.

Wigging Out

So last weekend, my wallet fell out of my pocket on a walk. Naturally it had disappeared when I retraced my path a few minutes later. I was closing bank accounts when it hit me. I'll need a new drivers' license...with a new OFFICIAL photo...of me! I ran through my options. I could go bald (aackk!), a scary proposition for everyone concerned. I could wear a hat...which they'd ask me to remove (see option 1). I could wear a scarf, be mistaken for a Muslim, and be profiled every time I go through airport security for the next 3 years. I had to go lie down.

Finally, a friend offered me a loaner wig in pretty much my hair color and a very different style than I am used to. All I had to do was put it on to feel like someone else. Would the DMV think I was someone else, too? I'd have to risk it. Luckily no one in officialdom suspected, and I will see the resultant photo next week. Will I have to mutilate or 'lose' it? Time will tell.

My next chemo is Monday. I dread this one than I expected. I can see that each treatment hits me harder than the one before. All my dear family will be out of town for most of next week.

But I'm not deserted. A group of ladies from church will be cleaning my house while I'm taking the treatment - I'll come home to a sparkling house. I will be leaning hard on my Mom & Dad for driving & emergencies - bless them! And our deacons are bringing over meals several times during the week.

CarePages echo #2

Becoming

Thanks for your prayers this weekend. Monday I took a turn for the better and today, I'm beginning to feel human again.

My Doc chirpily told me on Monday that all of my difficulties were within the bounds of normal expectations for this type of chemo. Well, the burning hands & feet concerned her enough to consider reducing my taxotere dose in the next round. While I'm glad to know that I won't be having to spend my most miserable days in the ER, I'm a little daunted by the prospect of anticipating this stuff in the ordinary course of affairs.

At this rate, I'm useless for a good ten days following chemo. I find being a virtual invalid as difficult as the actual symptoms. My good friend, Sandy, a breast cancer survivor, put things into perspective for me over coffee last week. "Asking for help is one of the things God wants you to be able to do."

It was an Aha! moment. These disabilities are practice for expanded ability. Ps 104 reminded me today that the waters that drowned and shrouded the mountains as they rose as scars on a broken earth, are the same waters that nourish man and nature today. All wine-gladdened feasts, all forested wonders, all mysteries of the seas flow from springs that frolic down the craigged remnants of that terrible judgment.

So once again, it's not about what we have been. It's about who we must become.

CarePages posts now here, too

After receiving several distressed messages from friends whose computers don't want to be friends with CarePages, I agreed to post the CarePages notes here as well. If you want to subscribe here, you can set your preferences to email you when I post, just like on care pages. See the sidebar. Sorry to all of you who are seeing this for the second time. Here are the last two CarePages posts.

Chemo #2: Natural Therapies Pay Off

This second round of chemo started with 2 hours worth of labs and tests. (They took more blood than sparkly Edward.) But the results showed that the fasting across the chemo toxicity, and the naturopathic supplements (not to mention the prayers) have been having a significant protective effect. Most of my blood counts were still in the normal range, only two dropped just below the line. And my kidney function, which is expected to be impaired by the Avastin trial, actually increased!

I am very encouraged because the first round of chemo is an especially heavy dose the Doc calls the loading dose. The rest of the treatments are smaller maintenance doses.

Today I will start a few new supplements to combat the Hand & Foot syndrome reaction, which is already showing itself again. I am hoping to upload a music video of a setting for Ps 123, which I wrote, before my fingers get too burned to play. Ps 123 has become my theme song for cancer. I'm not in charge; I'm not in control, but I'll take my cues from the Master whose hand I watch intently.

Watch for it on my blog: www.mother-lode.blogspot.com If you subscribe, you can set your preferences to email you a note when I update there. You can also follow me on Twitter @KimAMotherLode. When I tweet about cancer observations I use the hashtag #kcancer

As the Stomach Turns

Well, this morning (Sunday) I woke to find the world spinning at a different rate than my insides. It must have been a riot watching me try to walk to the bathroom or even to sit up. Of course, none of my gentlemen watched (the girls are back at school). They leaned in to brace me to the straight path.

Against my better judgement, but in obedience to Dr's orders, I spent most of the day in the ER trying to run down the cause of my extreme dizziness & vomiting. The ER did its best to find out: CAT scans, x-rays, blood tests - the whole nine yards. In the end, they sent me home full of Benadryl and nausea meds with a big shrug of their collective shoulders. Jack says the good news is that they ruled out brain tumors and other shadowy horrors. I just feel sheepish - and slightly green.

I think the good news is that the dizziness has mostly passed. I have kept my dinner down, and had a good nap into the bargain. I was well enough this evening to go to a gathering of church musicians, in celebration of God's power not to let this disease have the last word in my life.

Tomorrow, I have a follow-up appointment with my oncologist. Please pray that she will have some insight into the dizzy episode, as it doesn't seem actually to be over. My hands & feet continue to blister, making basic chores mostly beyond me. Grr!

Things You Can't Do Without Cancer

Faithful followers will recall that God served me up this little Short Term Project (STP) this fall: breast cancer. And that I resolved (not merely) to beat it. So I've been looking for the things I couldn't have done without it. Thought you might like to have a preliminary look at my current list.

Without cancer you can't:

• Participate in clinical trials for new cancer drugs or natural therapies.
• Tear out your hair in clumps for emotional release or personal revenge (ask me later).
• Justify ordering people to fetch, carry, scrub, cook, open jars, or be your hands and feet without feeling guilty.
• Dress like a pirate queen in a business setting and keep your job.
• Inspire half a dozen co-workers to stick with the South Beach Diet through the Christmas holiday.
• Find a moral imperative in a hair-do or lack thereof (story for another day).
• See sunsets, snowstorms, Christmas trees or children's faces clearly enough.
• Catch a glimpse of the Bride in all her compassionate splendor as she dispenses gifts from Christ's bounty.

Lizard Woman

Well, I'm officially ready for the freak show. The steroids finally got ahead of the burning hands, but now everything that burned is peeling. Aaand the hair is going.

To tell the truth, it does feel like I'm half dead. Nothing tastes right. I'm touching life through a stiff film that flakes off as I bend. Even my eyes fog over like some snake shedding its skin.

"Wilt thou show wonders to the dead? Shall the dead arise and praise thee? Shall thy lovingkindness be declared in the grave? or thy faithfulness in destruction?" Ps 88:10,11.

David thought the answer was "of course not"; he was asking for deliverance. I think that since Jesus' resurrection the answer is actually, "Exactly! Yes." The dead rise to praise Him every day. So will I.

Advent: Crushed Head, Bruised Heel

Advent invites us to consider - no, to dance - the measure of memory and of longing. Christ has come; Christ is coming. It is not enough merely to think. It might be enough to journey, to wait, to bear the shame to shudder under the angels' song, to labor, to cradle, to wonder. It might be enough to live His coming. Every year He comes into a new place in each of us personally. And He uses the wildest media. The things we discard, disregard, dread.

This year, for me it is illness and humbling. I have cancer. I am not in control. My cells have forgotten their duties. I have forgotten what it means to be human. Judah had forgotten what it meant to be God's people. Surgery at the end of the old Church calendar carved out the deadly flesh that spread still more death. The chemotherapy coincides with the beginning of Advent, the new year of our Lord.

I am looking for Him. Will He "reconcile the violence in my heart"? Will He purge the demons of my past and read, somehow, the longings I have buried under the limping drive to make some kind of a difference to His Kingdom? What kind of new birth can I expect in the stabled darkness?

Surely He will come. Even Time serves Him. I expect to hear the Gloria, to rock the limp weight of new life...something. But I will not settle for a substitute.

Come quickly, Lord Jesus!
-----------------------------------------------------
Artwork by Kim Anderson. Crushed Head, Bruised Heel. Ink on glass, 1978.

How NOT to (merely) survive cancer

Did you catch Kyle McDonald's One Red Paperclip? In which, an enterprising guy traded for a year for a house, starting with one red paperclip? Maybe you saw SuperSize Me! in which a brave guy with questionable intelligence ate only McDonalds fast food for one month and proved that it will make you sick - and fat. These short term projects or STPs are the thinking man's reality TV.

Well, some are born to STPs, some achieve STPs and some have STPs thrust upon 'em. A few days after my last post God thrust upon me a one-year STP: breast cancer. One year to lose hold of all the projects I’ve chosen. One year to be the needy one, the un-able, the circumscribed. One year on the Tilt-a-Whirl of chemo, radiation and clinical trials. One year to focus on saving my own life (something about that just seems wrong to a lifetime, frontline Christian :p).

Nevertheless I still have choices, in the grace of God. So the STP that I chose is: How NOT to (merely) survive cancer. I will be looking for opportunities that come to me uniquely because I have cancer. Hands in the air, screaming my lungs out, I will be hoping to step off the ride next Thanksgiving, wobbly with triumph, with something more than (merely) my life in my hands.