Out of My Mind (with a Brain Tumor) Part I

Dear Lindsey,

Hearing the story of the 10 lepers whom Jesus healed (and only one came back to say “thanks,”) reminded me to say thank you, Jesus. Thank you for every day, every sunrise, every received smile from my child, every swallow, and every breath.  I hope to always live in gratitude, but 2007-2009 marked years for which my “thank You, Jesus!” gained weight.

As I reminisced in writing this story, many of the emotions came back to me –the tears, the stress and the gratitude for friends. I need an acknowledgement section in a future letter!!

Here’s the story…

The Headache Journal, December 2007

The arrows that stuck in my husband’s back seemed to attract more arrows from other angles.  I felt myself crumbling with stress, and yet, crumbling with guilt for feeling stressed. Didn’t I trust that God already had this battle for us?!

To my right, the “friend” who stole our Jeep would be in jail, but the broken trust cut deeply.

At my left, I could see the addiction was destroying everything she had known, yet her blindness made her plow forward not recognizing the monster sleeping within her hobby.

Behind me, I felt the pressure of those Michigan neighbors whose jobs were tanked with the economy. Their children were yanked from my children’s teams, as payments for activities got cut with the family budget.

My headaches began so subtly, it seemed I could assign the cause to anything – and thus, “the headache dance” began.  I could blame it on stress, lack of sleep, hormones, too much sugar, not enough sugar, too much fake sugar, caffeine, not enough caffeine, not exercising, wrong exercising, not enough water, not enough vitamins, busyness of homeschooling two children while entertaining my 2 and 4-year-olds, all while adapting to a new house in the boondocks of Michigan.  My list of reasons for the headaches was enough to give me one.

The scientist in me eventually began a journal – a simple calendar with a note each day, labeling the pain between 1 and 10. Were headaches really ruling me as much as it seemed? The journal began in December 2007.  headache journal

The grid told the story: five days in a row of level 2 pain, spiking to level 8, then a day or two off. Then blindness, followed by a 24-hour migraine. Then bliss. Then a couple days of level 4 pain, ended by forcing myself to bed at level 6. There were some days I couldn’t remember what it felt like to be without pain, and other days when the pain was so distant, I would forget the underlying worry.

In Hiding, January 2008

To stay focused on others, I don’t like to talk about medical conditions.  Besides, stating, “I have a headache,” only reminded people to tell me about their headaches, and did nothing to relieve my pain, much less bring glory to God. Because my husband frequently travels, I knew if he knew my pain he would feel worse about leaving. But in the hot-tub, as I scrunched down, trying to heat the nape of my neck, through tears, I put up the white flag of surrender and told Chris I couldn’t handle my life.

Aside: We can’t handle it. God does. When we forget, He’ll remind us – sometimes gently, sometimes more painfully.

They were not “headaches”, they were truly “head-pains,” I told him, not sure what I wanted him to say or do about it.

We wintered in Florida that year, and I had hoped the climate change would bring relief, but it only got worse.

The Florida sunshine became a nuisance; the glare seemed to light a fire in my brain. My vision seemed “off,” so I began the headache dance in the medical world:

  • “80% of women complain of headaches with no known cause,” the urgent care doctor deflated my hope, after I drove myself there for immediate relief once when Chris could stay home with the kids.
  • “Eyesight causing headaches is a rarity,” said the eye doctor after an extensive exam.
  • “Hormonal headaches are something many women just have to deal with post hysterectomy,” the OBGyn told me before changing my HRT prescription.
  • “I have taken care of 90% of the headaches of which people complain,” the chiropractor said caringly, “I really don’t know what the deal is.”

I waited months and drove hours to see highly recommended holistic specialists.

My prayer journal was filled with prayers for ME.

My prayers grew depressed:

  • “God, how can this possibly bring You glory if I am in bed?!”
  • “Lord, my 2-yr-old turned 3, and I feel like I am only hiding from him.”
  • “God, I want to raise my children to be readers, to be disciplined, yet I have virtually locked them inside for months, often in front of a movie so I can lie down with heat on my neck and ice on my forehead.  My head can’t handle their squabbles, much less lead them biblically through it.”

God brought friends who randomly offered to take my kids without truly knowing the extent of my situation.  In March, I finally poured out my heart to my friend Donna Ascol, and asked for prayer. Matthew 18:19 in action.

Under Pressure…flying

A flight to Atlanta and then a subsequent flight to Canada that April put me over the top. I was sure my head would burst from the pressure changes; I prayed I would lose consciousness.

Wow. Tears flow today – just in remembrance of trying to keep my world turning that year. My responsibilities didn’t stop – and I didn’t call “May-day!” because it felt like we all have headaches or some other issue we have to push through. However, I promised myself to continue the medical search for a solution, once we returned to our regular doctors in Michigan at the end of April.

In the mean time, a noise began in my head. I researched “ringing in the ears,” on the mighty online doctor, who of course told me there was no cure.

The “ringing” turned into a chain saw.  A grinding. Daily. Sometimes it was louder, sometimes quieter, sometimes silent. I never noticed it starting, so it must have been gradual (or I was too distracted by head pains to notice), but I never noticed when it stopped. It just came and went, and eventually I would notice its presence or lacking. “Grrrrrrrrr” went between a whisper and a scream in my right ear.

After a brain MRI that month, the general practitioner in Michigan let me know there was a “meningioma on the left side. They’re harmless; you may have had it since you were a child, but since you seem symptomatic, you should see a neuro.”

The neurosurgeon was not much older than I, and had apparently seen more brain MRI’s than the general practitioner, because she told me the tumor was actually on my right side.

March head“Is THAT why I have this noise in my ear?!” I blurted, for the first time telling a doctor about the noise, because I hadn’t wanted to mention it to the family doctor; I was surely toying with the psych ward already.

“No,” she said confidently.  “Your headaches are not related to this thing either. This kind of tumor can come and go on people.” (I remembered my dad had had a water cyst found on his brain after a fall a few years back. They said it was not related to the fall, and had been there since he was born, and would be until he died. I assumed this was similar.)

“I wouldn’t worry about it. Come back in a few months and we’ll do another MRI to make sure it’s not growing.”

I went home depressed, yet not surprised. I knew the chances of finding the cause were slim. I was hopeful, however, because a new hormone replacement was lessening the headaches and the ear noise had virtually disappeared by summer.


My older brother had been diagnosed with a rare colorless Melanoma (dangerous skin cancer) that winter. After several surgeries, they were able to get clear boundaries. (Thank you, God!)

“Siblings are the most at risk,” he warned me. Of course it reminded me that I had been meaning to get that spot on my leg checked. The dermatologist said it looked fine, but wanted to biopsy a different one. Diagnosis: “a-typical pre-melanoma.” All clear. But when I went back to the general practitioner to have the stitches removed, I asked him about the other spot on my leg that still had my attention. He said, “If it’s worrying you, let’s take it.”

Diagnosis: Basal cell skin cancer. (I use the term “cancer” lightly, since it is not the dangerous kind.)

“I must admit,” the general practitioner said, “I really agreed with the dermatologist that it didn’t look like anything.”

He removed several more spots between June and August that year.

Each time I had the stitches removed, the wound would pop open within a day. The lack-of-healing revealed a pharmacy error. Apparently, my hormone replacement prescription had changed dispensers and been halved, but they forgot to mention to me that I was supposed to take double. The lack of estrogen meant lack of healing, (along with other symptoms) until we figured out the solution.

Choking, September 2008

On the way home from an Ohio soccer tournament, I choked on coffee. I know. Who chokes on pure liquid?! Me, that’s who! I poured hot liquid directly into my lungs…and then coughed and sputtered until Chris almost pulled the car off the highway to try to save me. It felt like more and more often, things were going “down the wrong pipe”! We had friends over for a cookout on Labor Day. I was thrilled it lined up to a day without a headache, but unfortunately, laughing was painful. As the day continued, I felt like something was wrong in my lungs. My whole mid-section hurt.  It’s funny how I didn’t like to talk about medical issues, and the Lord kept having me in places where it was impossible to hide. I couldn’t breathe without pain. Laughing: not. I spoke shallowly, with much effort. I finally took aside my friend, Susie Hallstrand, an RN and life-saver many times over, and told her what was wrong. She did an assessment and decided maybe not holiday-emergency-room material, but I should see a doctor the following day.

Is this what it’s like getting old? I lamented, as my calendar kept filling with doctor appointments: skin, head, eyes, hormones….BLECH! Back at the family doctor, he named the chest condition- something like sore muscles, usually following severe coughing, like pneumonia.

“Or choking?” I asked.

“Sure, that would do it,” he said, and I recalled my wrong-pipe incidents that must have led to my painful breathing.

Health Insurance Decline

My insurance company went bankrupt. (It WASN’T MY FAULT! REALLY! At least notAug head yet.) As I applied for more insurance, I was turned down. What?! Healthy me? Water-drinking, exercising, prayerful ME?!

Reason: skin cancer? Breathing issues? Headaches? What?!

The insurance quote got my attention:  “impending brain surgery.”

I had never seen or heard those words before, so I really thought there was an error. I happened to be talking to my Florida friend, Laurie Woodward that week, who practically begged me to go back for another MRI, despite how I was resisting it. Really, I had all these other problems to deal with – who has time to go spend thousands of dollars on another MRI to check something which they said was not dangerous and unrelated to these other issues at hand anyway?!!

I scheduled an MRI for September 6, 2008, a Saturday, knowing my doctor would be on vacation until September 22, the date of my follow-up appointment.

Like the Brady Bunch episode in Hawaii with the totem pole guy and tarantula:…..……...to be continued…….

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