It's My Birthday, and I'll Cry If I Want To

We traveled down to Rochester, entering those carefully planned buildings, beauty even from 12 stories up, the geometric curves of the architecture breathing life into a scary place. No one ever goes to Mayo to get good news. It is two days before my 33rd birthday, and I am nervous, palpably anxious, as they screw my head into a vise (they have named it a "coil" which sounds slightly less terrifying).

My eyes dart furtively from inside the cage that is clamped down less than an inch from my nose, and I ask, "How do I get out of this thing?" "You don't", they reply, and decide to strap my arms and legs down down, too, to prevent me from going all kinds of crazy and prying myself free from the giant tube into which they are planning on loading my body. I push against the restraints, just to see if I'll be able to get out, and it's worthless. And so I start practicing my breathing techniques instead. You know, the ones you use to get through childbirth.

The next day, leap day. My one extra day every four years to be the age I am. I got to be 32 for one extra day this year. I had an appointment with my regular physician to talk pain control, figure out how we're going to navigate these next few weeks of nerve pain brought on by the injection I received into my ear drum on the 13th. I wasn't expecting to get the results of the MRI until March 1, my birthday. It did seem like some cruel joke, to find out whether or not you had a tumor on your birthday.

Well, apparently God thought that was cruel, too. Because, after a few phone calls to the right people, my regular doctor was able to procure the results of the MRI. And they were {drum roll please!!} NORMAL! I do not have cancer in my brain!

Nevertheless, the pain continues, and this morning was bad enough I went back to the emergency room for more tests and drugs. The tests revealed nothing (I don't know if that's a good or a bad thing at this point) and the drugs helped. I had the joy of spending an hour with a very dear friend in the ER while my mom graciously tended the children (again).

And so I start my 33rd year taking narcotics around the clock and somewhat resembling a pincushion.

The diagnosis, for now, is trigeminal and facial nerve neuropathy. I am praying that I just wake up one morning and it has just disappeared.

You are not alone

The pain surges like electrical current through the side of my head, it's tiny knives skewering deep. It drains the mind of creativity, stills the hand that would be working, quells the desire to be upright and participating in this family. I curl up in the dark and relative quiet of my room, stuff earplugs in to muffle the residual sounds, close my eyes shut and pray for sleep, the ending to this long, hard day filled with suffering.

Such a tiny organ, your ear. I feel all kinds of foolish when I walk in the ER doors and ask for an injection to stop the pain in my ear, of all places. But there, in the middle ear, is one of those places He wove together in silent, the meeting of several of your cranial nerves:

• Olfactory nerve: controls sense of smell and taste
• Optic nerve: responsible for vision
• Oculomotor nerve: controls pupil constriction
• Trochlear nerve: eye movement
• Trigeminal nerve: sensation of chewing, moving mouth, pain/touch in the face
• Abducens nerve: eye movement
• Facial nerve: taste/smell sensation; coordination of swallowing; sense of touch on face
• Vestibulocochlear nerve: balance
• Glossopharyngeal nerve: swallowing, chewing, tasting
• Vagus nerve: controls heart, lungs, and digestion
• Hypoglossal nerve: controls tongue movement

All these nerves pass through or in close proximity to the inner ear. Right now, my trigeminal nerve, facial nerve, and vestibulocochlear nerve are all out of whack. It is no wonder I'd like to spend my days squeezing my head and squinting my eyes closed. It is a rare complication of intratympanic (inner ear) medication injections when the nerves are irritated or accidentally poked by the needle being used to inject the medication. While the medical literature is rife with articles touting the benefits of the inner ear injections, a few small studies have looked at pain during and after the injections. One small study of less than 100 people found that 45 patients reported severe or "debilitating" pain that lasted for up to 6 weeks post-injection. Of these 45 people, all had received dexamethasone (the med I was given). The placebo group and the group receiving antibiotic injections reported no pain, not in a single person.

I breathe a sigh of relief. At least I am not alone. And at least I am 3 weeks into a 6 week course of pain.

I, of course, would appreciate your prayers for my ability to function well as wife, mom and student, and also that the pain would quickly subside.

Joys collected:
*Mama movie night on Friday
*Children's voices lilting happy through the headache
*Dishes done, over and over
*Sun streaming through windows on a Monday morning

Change of plans

Photo credit

The wind blows wild and weird, howling around the corners of the house, as if the earth knows the sorrow of this day, wishes to sweep away the ashes collected from last year's triumphant palms. I lift Old Speckled Hen up to my lips, drinking in the smells and sounds of a London pub, closing my eyes to the vision of him at 19, Bob Dylan brown like a lion's mane around his red whiskers. It is happy birthday I'm drinking down, a week early just in case the actual day heralds bad news this year.

I arrived at Mayo with Aaron yesterday to find that my appointment had been inexplicably scheduled in error, for a Sunday, February 5th, before I even went there for my hearing loss. The schedulers were completely miffed as to how an appointment could have been scheduled in the past. Instead of having an MRI to rule out a brain tumor as a potential cause for my sudden hearing loss and facial nerve pain, I only had another hearing test (which showed the hearing loss has finally stabilized instead of getting worse) and another consultation with the doctor. No new treatment was indicated, so I went home with more pain meds and a plan to wean off the steroids I've been on for 3 weeks now.

What is God up to? Why would this test not happen this week? He lays before me another week of waiting, a week of living with this pain that makes my heart jump with fear of another tumor. I will receive the news of the MRI results on my birthday next week. It all seems like such a hard road to walk. Infinitely more difficult than it would have been to get the news this week. Did he want to preserve Caleb's birthday from bad news? Is he giving the tumor or illness time to heal so that I won't have to undergo brain surgery? Who can know? I read that "worry does not empty tomorrow of it's troubles; it empties today of it's strength". I try to lay aside the anxiety and take up his easy burden.

And when the servant of the man of God arose early and went out, there was an army, surrounding the city with horses and chariots. And his servant said to him, 'Alas, my master! What shall we do?' So he answered, 'Do not fear, for those who are with us are more than those who are with them.' And Elisha prayed, and said, 'Lord, I pray, open his eyes that he may see.' Then the Lord opened the eyes of the young man, and he saw. And behold, the mountain was full of horses and chariots of fire all around Elisha. (II Kings 6:15-17

Bare feet stepping on glass 

We break along life’s paths 

Our fear and loss, we bring it all to you 

Soul-breather, making all things new  

You’re making all things new 

We come in pieces 

We come in fragments 

We come discolored 

To the foot of the cross 

Our Maker sees us 

All that we have been 

Bonds us together 

The Image of God 

Clay vessels molded for His own 

Shall we question him who holds 

And shapes us, for His perfect use 

Soil breaking for the seed 

Seed breaking for the life 

His life broken for the soul 

We are remade whole, remade whole

~Image of God, Christa Wells and Nicole Witt~

Losing Normal: Emotions on Tuesdays

Sometimes it just hits you in the gut like a ton of bricks. There is nothing left in your life that is normal. You watch, on Facebook, at church, through blogs and e-mails, as your friends and most of your family progress through a "normal" life, with fun pictures of holidays, updates about jobs, all the little details that make up "normal". And you realize there is little left you can claim as normal. I found a photo taken a few weeks before we lost normal. What brings the tears the quickest is my children.  They don't remember "normal". I see Katy's innocence. I had never asked to learn to do laundry or cook a meal or clean a bathroom yet. She has had to grow so fast. And Rosy, so easy going and self-motivated and happy. She sometimes gets lost in the shuffle of the non-normal. How can I make my peace with these losses?? How do I see this as a gift??

One of our last days of "normal".  Two weeks before my cancer was found.

Life was messy, and crazy, and hard work.  And wonderful.

Most cancer patients go through this, as their life gets ripped to shreds by cancer, its treatment and the treatment side effects. An even smaller number continue to go through this for a long period of time. That is where our family fits, once again in the statistical margins, defying the definitions and the predictions. Even worse, it's not just cancer that has our number. It's everything from infections to accidents, and "normal" life problems gone awry, like food poisoning and routine surgery or vaccinations. Nothing goes "normal" for us.  Not in 2 1/2 years.

I have to write it, this broken heart that longs for the day when I look back and realize no one has been in the hospital for several months. The day when I realize that I have actually managed to care for my own children for a whole month without asking any relatives for help or spending any exorbitant dollar amount on childcare. The day when I realized I've cooked every meal and swept every floor and wiped every nose and taken every picture and maybe even passed a test or gone on a real...restful rather than healing...vacation.

I know, deeper or truer than most, that life is a gift and every day, however flawed, is a blessing. I know that my life is already a half-blown seed pod, and I need to be mindful of how and when and where I blow those seeds remaining. But there is such longing to just be normal again. I remember with longing a day I was frustrated because I forgot about dinner until 4 p.m. and had to rush to defrost something. I look back at a day when I cried over the 10th poopy diaper and pleaded with God for an "out" from the drudgery of motherhood, and I laugh at my near-sightedness. I recall a vacation when I fought with Aaron because of a difference of opinion about a leisure activity, and I wish I knew then what I know now. I also know that, should God ever grant "normal" life to me again, I will forget all of this, most of the time. I will take things for granted, and throw away blessed moments for the sake of my pride, and I will choose the wrong things to spend time on, and I will wound people and shock myself at how stupid I can be again so quickly. All those little details look now like the miry clay at the very bottom of the clear pool of life.

It is kind of like yearning for childhood as an adult. This longing for something easy for a change. God says to give up my life to find it. Okay, Lord. You've got my life. It's long been given up. Please help me find the new one in the wreckage. Please heal us. Please rescue us. And please let me never forget.

{a repost from the archives on this busy Tuesday: we are down at Mayo for an MRI to rule out a brain tumor as a potential cause for my sudden hearing loss - pray, please?}

This is our Emotions on Tuesdays link up. Link up to a post, old or new, about your emotions. Tuck the graphic at the bottom of your post, and come back to share your story with all of us!

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Coping with the everyday after bad news

I can't hear the words to music. It seems like such a small inconvenience, but, to someone who loves music as I do, who goes through each day to an internal soundtrack of songs, it's a pretty big deal. My thoughts drift to hearing aids. I wonder if they would help. At this point, I don't even really know what my long-term options are as we still aren't sure why I've lost some of my hearing or whether or not it will come back.

I look at the hearing aid case at the doctor's office, and I see some of them look just like earrings. So that's pretty cool.

My counselor asks how I'm handling all of this, and I guess I am handling it well. My emotions are raging (thanks in part to the steroids), but I'm living with my emotions without freaking out or reverting to my old habits of harmful coping skills. I haven't said the "c" word in front of the kids. I know it will be hard for them on the 21st, if the MRI shows cancer and I go right to surgery. But at this point, just a week after we heard "remission", I think it would be worse to worry about it for the intervening two weeks. So, to some extent, I'm dealing with the darkest of the worries on my own.

I crave your prayers - that my hearing might be restored, that they will find and treat the cause, that I don't have another kind of cancer. Thank you for all the love you've poured out on me over the past week since this trial hit. I am blessed more than you know.

The unknowable {a hearing update}

The music rolls like thunder out of the Bosendorfer grand piano, a diminutive elderly woman with arthritic fingers that still fly to melodies memorized years long past. A woman with no legs is in a wheelchair on the marble floor under the streaming sunlight, and she raises one hand in praise as she makes that wheelchair dance and twirl with the other. It is the strains of "How Great Thou Art" filling this very secular space, and people stand against the railings 3 stories up, their harmonies cascading down in a sweet and singular moment when the broken people gathered here for treatment only found at a nationally renowned medical center rise up and claim this day, this moment, for the glory of God and delight in His presence.

I am the walking wounded, shell-shocked, and I have to pause to catch my breath in the beauty of all this. It is untenable to human understanding, the roller coaster a cancer patient rides. Only with a God-sized brain could I understand the purpose He's laying out before me today.

Last Tuesday, I lost most of the hearing in my right ear. By Thursday, I had difficulty hearing out of my left as well. All my local doctors could tell me is that this sensorineural hearing loss (a condition that affects the nerves that interpret and carry sound to the brain), probably auto-immune brought on by the assault of the radioactive iodine for my recent cancer scan. They sent me to Mayo for more testing, in hopes that more steroids could restore some of the hearing in my left ear.

I saw the chief of the ear, nose and throat department at Mayo this morning. More testing revealed that the steroids have indeed restored some hearing in both ears. I now have what is considered moderate hearing loss in my left ear and moderately severe hearing loss in my right ear (I cannot make out any words or make sense of sounds with my right, I can only tell that there is sound coming in). After reviewing this information and doing a thorough check of my medical history, the doctor presented three explanations for my hearing loss.

1) Sensorineural hearing loss, autoimmune: my immune system is attacking the structures and nerves of my inner ears. This condition is life-long, with hearing coming and going, getting worse and better. The treatment is frequent bursts of steroids and also injections of steroids into the inner ear. This is by far the "nicest" possibility.

2) A familial defect in my brain that has led to hearing loss that will most likely be progressive (getting worse) despite treatment. This is even more a possibility because I have multiple relatives who are deaf.

3) A metastatized or new cancerous tumor affecting my auditory nerves. Treating this would involve brain surgery and most likely permanent damage to my hearing, perhaps rendering me completely deaf. The doctor believes there is at least a 50% chance of a tumor, based on his observations.

I was just told I was in remission last Wednesday. To hear the word "cancer" usher forth from a new doctor's mouth put me in some state of shock. It simply doesn't seem possible that it's even an option! My over-riding emotion is consternation. I don't feel angry, scared, worried. Just shocked.

Sufficient unto each day is the trouble thereof. (Matthew 6:34)

My next appointment is February 21st, my son's 4th birthday. It was his birth 4 years ago that heralded the news of my thyroid cancer. It is possible I will get news of cancer again on his very birthday. It all seems too much. For now, I will be trying to weather the effects of the steroid treatment (rage and irritation, hot flashes, insomnia, among others) and I will be trying to keep my eyes fixed on the prize...not the arduous pathway that intervenes.

There is verse we read in church on Sunday: they shall mount up on wings like eagles, they shall run and not grow weary, they shall walk and not be faint (Isaiah 40:31). How scary would that first moment soaring like an eagle be? How far do we have to run or walk that we might grow weary or faint? This verse is sung as a song of rescue from our human plight. But it implies the hard work that accompanies sanctification, that difficult and often dreary path tread by so many saints before, the grassy ground watered with their tears, the shuffle marks of their tired feet marking our way. I pray for strength to endure this newest uphill climb in my faith journey, in my life. May you find strength, too, friends, whatever you face today.

This is the very group that led us in "How Great Thou Art" today. Listen in the background for the voices of the patients who stopped on their way to appointments to sing along. It is the best kind of "flash mob", to bring true hope to the hopeless and hurting.