What is even going on?

A lesson in bewilderment

Monday, January 12

I finally had an appointment with my oncologist to go over all the great test results from the weeks before, but when I described the increasing pain I had been experiencing for months now (8-10 seconds after I stand up, a throbbing pain pulses through my lower skull and shoulders and lasts 5-10 seconds….often I have to close my eyes and grimace to get through it), she discounted my working theory that it had something to do with low blood pressure.

Frowning at my description, she said, “Let’s order a cervical spine MRI to see if something else is going on.” I was relieved that she took the pain seriously and wanted to help me figure out what was going on.

I don’t have cancer right now, but something is going on that doesn’t seem right.

I had gone to yoga that morning, modifying greatly as I do lately, but after meeting with her, decided that I would minimize extraneous movements in my neck for now. The MRI was scheduled for Friday morning, and I had my surgeon follow up on Tuesday. I was going to get some answers.

Wednesday, January 14

I walked to my acupuncture appointment in the balmy 50-degree weather that had been plaguing Central Oregon this June-uary. Kym found my neck to be incredibly tight, but my shoulders were the most relaxed she had encountered during the year I had been visiting her. Hmmm, strange, I thought.

I reiterated my complaint of throbbing pain in the lower half of my skull and shoulders when I stood up, the same thing I told my oncologist on Monday, and that a neck MRI had been ordered. While I was resting with her needles tapped into my muscles and meridians, Kym consulted a physical therapist in her office and came back with the suggestion to tuck my chin into my chest when standing up, using only my legs. I practiced the movement and was delighted to feel less pain upon standing. The theory was that something in my neck was getting pinched when I was standing up, causing the pain. I walked home, and every time I stood up the rest of the day tucked my chin into my chest.

Ok, so what was causing the pinching?

Thursday, January 15

I was up in the wee morning hours again. This time it wasn’t the steroids that woke me up like last year during my chemo treatments; this time I was worried about my neck. I woke up and couldn’t get my sore neck off my mind. I had additionally started to feel a “pulling” on the back left side of my skull. It felt like things were progressing.

I kept replaying that week’s appointments and pain in my head in an infinite loop when I finally decided to get out of bed. I put on an episode of Poledark, a show both my mom and I had been watching on Netflix.

One particular scene and line stood out, and I rewound the episode enough times to write it all down:

You can not fight all the world. You can only make your own small corner a fairer place.

We are living in such a tumultuous time, I was living in such a tumultuous body, that I found real solace in that passage.

We can only do what we can do in our small corner of the world.

It’s easy to throw up our hands in despair when we see things on a world scale. That shared story has been true always and everywhere. It really doesn’t matter if it is the 1790s mining communities of Cornwall, or today in the streets of Minneapolis. We have to do what we can do in our corners. I was happily ruminating on that line and its implications when suddenly the potential of my situation hit me like a ton of bricks.

My body was trying to tell me something and I hadn’t been listening. It’s time to put my neck brace back on.

My brain had been playing doctor’s appointments over and over in my head, I kept focusing on my pain and the really tight and sore neck, not seeing the trees for the forest. I even had the audacity to tell a few people that I didn’t trust my body anymore…it didn’t know acceptable pain from damaging pain. I didn’t have cancer so why is my neck pain increasing?

Duh!

My neck pain was increasing because something was wrong in my neck.

• My neck muscles were sore from trying to stabilize the bowling ball that was my head.

• The pulling feeling in my skull had to be related from my body trying to stabilize itself.

• I had started to move my body instead of my head when looking to cross the street.

• I had ordered a $90 “Level 5” CBD pain ointment for my neck and shoulders.

When I let my brain catch up to what my body had been telling me the last month, and I admitted to myself that something was very wrong in my neck, I was devastated.

I heard Kirk’s 4am alarm go off, and went into the bedroom sobbing so hard that he jumped from the bed in alarm. I pointed to the closet and was finally able to eke out the words “I need to wear my brace again, it’s in the closet.”

Something was wrong.

I was convinced my condition could be an emergency, so I messaged my surgeon to give him a heads up on my symptoms and to prepare him for the MRI coming in the morning. I also mentioned we had planned to drive to the coast for a friend’s birthday weekend, but I could cancel the trip if my neck was too vulnerable.

I didn’t hear back from the doctor that day, but the neck brace and pain meds were helping tremendously. I felt safer. The muscles that had been working overtime were able to relax, and I took my pills without wondering if I should.

My concerns were legitimate.

Friday, January 16

Thank goodness my MRI was at 6:55am. I didn’t have to wait long, and once I was in the machine surrounded by the clicking and buzzing, I almost relaxed.

Something was being done.

I expressed my sense of urgency to the MRI tech. Last time I felt this way I had been whisked away to the emergency room and surgery. She assured me if it was an emergency someone would get in touch.

I went home in a strange calm.

The My Chart results came in an hour later.

It sounded bad, real bad, and I couldn’t decipher most of it. Parts of my spine were mentioned that had never been mentioned before. “Severely compressed vertebral body fracture,” was a phrase I knew, but the severely part was new. A “mildly compressed vertebral body fracture” in a completely new part of the spine was recorded, my pain was likely due to a “degenerative marrow edema,” and other “scattered degenerative findings” told me one thing: my spine is crumbling.

I waited for a doctor’s call, but none came.

I slowly packed and prepared to head to the coast. During the drive I kept my phone close, but no call came. By 5pm on Friday night I decided I wouldn’t be getting a call, and I’d need to wait until my appointment with the surgeon on Tuesday afternoon.

The Weekend

I kept the pain meds on deck, and let myself experience the joy of fabulous company in a beautiful part of the world. Oh, and I ate a cheeto for the first time in a year! And a strawberry starburst! I wasn’t fighting cancer at the moment, so I let my guard down and ate some food because why not! My spine is collapsing!

The pain and throbbing continued, but as long as I wore my brace and took my pills, It was manageable and I was able to keep the demons at bay.

We walked on the beach, ordered pizza, put puzzles together, ate birthday cake, watched football, and walked on the beach some more. It was perfect.

On Monday morning I realized the “pulling” I had described at the back of my skull was really a spasm that was by this point, throbbing rhythmically at the back of my head. If I took pain meds the spasming stopped, so I kept on a steady regimen of drugs.

And this was it. This was the moment to put the “live now” blathering into action. If I was faced with a crumbling spine, which probably meant surgery, radiation, or some other combo of hospitals and extended bed rest, then I was going to have this day with the people I love and only focus on what was in front of me. That morning, it was a marionberry scone and delight at the jelly fish we found washed up on the beach. It was walking with the love of my life, my heart bursting with joy at spending the weekend with Brooke, Adryon, and Alex (Brooke’s brother).

I would die happy if today was my last day.

Tuesday, January 20

I was calm.

I woke, drank coffee, and made plans with Kirk to go to the surgeon’s appointment together later in the day. I slid into an easy morning.

I would have answers today. There was no reason to fear.

I had a phone interview with a woman working on a story about the Blue Mountains Trail, had a zoom with my creatives freelancing group, and heated up leftover curry for lunch while I watched more Poledark.

I started to get a little agitated when we got in the car to head to the hospital. I surveyed the clock to make sure we would get there on time…or early, I do like to be early. And by the time we walked into the waiting room my name was being called.

Yes!

Kirk and I sat waiting for the doctor to arrive and I surveyed the graphic of a spine on the wall. Ok, now my T3 was collapsing. The T3 supports upper body movement and respiratory function, and affects the lungs and upper chest.

Ok, got it.

The doctor came in, noted my c-collar, and I explained that I feel more comfortable with it on. I go over what I’ve been feeling, and he takes a big breath and explains that my spine looks stable in the imaging. I stammer, “But more vertebrae are collapsing, I feel like it’s crumbling.” He assured me I am not crumbling, and says again, “Everything looks stable, it looks really good in fact.” I look at Kirk in disbelief. “But, the pain?” Somehow, he doesn’t address the pain and the head and shoulder throbbing, and the skull spasms, other than to say nothing is wrong in the imaging.

It’s a short appointment. We walked out of there completely bewildered. “But!” I start again and again, “That doesn’t make sense!!”

I’m suddenly questioning everything.

Am I really feeling pain?

Is it all in my head?

But the My Chart results sounded so bad!

Even my oncologist said they looked bad, but she isn’t a spine specialist.

Am I making it up?

But what about the pain?

We drive in silence to Deschutes Brewery. I took off my neck brace. We walked in and ordered some food.

I’ll get a second opinion.

Maybe it’s not related to my spine.

Something must be wrong.

Maybe nothing is wrong?

But the pain? Is that real? I know it’s real!

I text my mom and some friends who were in the know. I hadn’t wanted to blog about my situation for this very scenario: maybe nothing was wrong. Maybe I was wrong.

This experience had been a week-long mindgame. I was convinced I was crumbling, then told I wasn’t crumbling.

What the %$##^$$#%!

Wednesday, January 21

Ok, maybe it isn’t my spine that is the problem

Google, what do you have to say about it?

I spent some time going through the MRI results, copying and pasting each finding into the search bar to decode the medicalese.

The plain truth of terms like “new sclerosis of the left C4 articular pillar” became much more innocuous when worded as “new hardening and increased density in the bone of the left C4 vertebra’s facet joint, usually a sign of osteoarthritis or wear-and-tear degeneration in the neck. It causes potential pain, stiffness, and reduced movement, and can be managed with conservative care like PT, anti-inflammatories, or sometimes injections.”

“Degenerative marrow edema,” became “fluid buildup in the bone marrow, often from degenerative joint diseases that causes pain, swelling, and restricted movement. It is treated with rest, anti-inflammatory drugs, physical therapy, and sometimes core decompression for severe cases, typically resolving over months.”

“Scattered degenerative findings in the cervical spine without thecal sac stenosis,” is “common, age-related wear and tear in your neck, but this wear is not compressing the main spinal canal where the spinal cord sits. This is a very common MRI finding, particularly in individuals over age 40, and often represents the normal aging process of the spine.”

Well shit.

Should I have googled all of this before letting my mind go hay-wire? Should My Chart results be shared without a doctor’s interpretation? Should I still get a second opinion?

And that my friends, is where I am today.