It’s another midnight hour and I’m slowly waking up to the glowing screen on my tablet. It’s balanced on my lap with one of those bean-bag platforms. I’ll tell you, this contraption has been a game changer. I can balance bowls of soup on here, and if I wear a bib tucked into my c-collar, I can feast in bed with minimal mess. 

Sure I could lay back and try for sleep again, but I feel like writing, so I’m gonna write.

There have been so many things to adjust to with this new body over the past few months, and by far one of the biggest adjustments has been wearing the c-collar ALL THE TIME. I’ve been wearing it full-time since my back surgery on December 21, and if my timing is right, I have another 5 and a half weeks to go. It does come off at night now when I can fully rest my neck against a solid surface and lower the top of my bed down with the remote we got for our adjustable spilt king Tempurpedic bed (game changer!) This bed has been worth every penny, especially because of all the tumors in my back and spine and ribs, I can’t lay down by myself. And the split means Kirk and I have our own sides. I don’t have to wake him up in the middle of the night when I want to raise my head or legs slightly…. I can’t stress enough how important it is for him to get enough rest to deal with me. Really! There have been some rough spots when I was on so many medications and I wasn’t quite sure what I could take when, and with what, so I was getting up every few hours during the middle of the night to take another pill. That meant Kirk got up too. I had had a few instances where I thought I was self-medicating properly, but then would later find pills in my lap, unsure if they actually got in my mouth, or not.  On one occasion I was sure I hadn’t taken an oxy, only to go practically comatose an hour later when the second dose went into effect. We decided I needed supervision after that instance.

But we did finally get some help with spacing out the meds with one of the pharmacists…I have a detailed spreadsheet (of course I do!) that lists all the meds and the times of days I could take them and the hours apart they needed to be taken (some were every 4 hours with food, some every 6-8 as need, some once a day at morning or night). It was a spreadsheet of confusion and heartache, but she helped us whip it into shape with the primary goal of having as many hours of uninterrupted sleep as possible. Things have been much better since then. There is nothing worse than a sleep-deprived Kirk trying to deal with all the day-to-day stuff. We gotta get that man some rest.

But then there is my bladder! I can’t get myself into the bathroom on my own, and in fact our old mill house is so old that the door to the bathroom is narrow enough that we need to park the wheelchair in the hallway, then I need to stand up using the crutches (that my lovely friend Meredith is letting me borrow) to then crutch my way into the toilet. That production is too much for your average pee, so we have a system where I sit on some towels on the edge of the bed and pee into a jar using my backpacking psytle. It works! But I need Kirk there to help hold the jar, stabilize me on the bed, all the things. I’m trying to be more independent there because again, some nights I’m getting up every 2 hours and he is not getting solid REM sleep. I can certainly pee into a container by myself…well at least we are trying that technique for a few nights.

Back to my neck. I get a few hours of neck-free relief. But as soon as I sit up again, it’s collar on. The titanium plate that replaced my C4 needs to steady itself in my body with all the titanium screws that were embedded into the surrounding tissue, and apparently, my bone will grow back into the screen they provided…so I think that’s some of the sensation that I’ve been feeling…bone growing back! I know I still have tumors back there, so I wonder is the bone growing in compromised? I have lots of questions, and since we are still waiting on finding out more about my genetic mutation, the approach my care team will take, and mulling over some of the recent MRI test results that were posted to my account, I’m going to take us into a new segment of this blog called: 

Interpreting a My-Chart test result in the middle of the night with no doctor supervision

The real doctors out there might be shuddering as I go into this segment, but for those of you who get test results posted days or even weeks before someone explains them to you, you know what I’m talking about. How can you not investigate? 

This test result was from an MRI I had on my neck and spine on February 1. I know that I’m at risk of reading something out of context or doing a deep dive into a new terminology or new finding without having the full grasp of the situation. I know that, but here I am, publicly sharing them with you in the middle of the night. Weee! Lets go! 

I’ll attempt to break down the top findings of the MRI below:

1. The primary finding was “Scattered osseous metastatic disease involving the left C4 pedicle, as well as the C7, T2, and T3 vertebral bodies as described above, with a severe pathologic anterior compression fracture of C7, with approximately 80% central and anterior vertebral body height loss.”
   • Ok, we knew about the other tumors and the big chuck of tumor left in the C4 pedicle, but the part of the sentence that threw me for a loop was “a severe pathologic anterior compression fracture of C7, with approximately 80% central and anterior vertebral body height loss.” What the what?? I spiral and cry. I’ve been sitting on this one for a week not sure what it really means…but I’m going to try to and wrap my head around it below. Hang in there with me.
2. The next result was “Postsurgical changes of prior C3-4 and C4-5 ACDF, without MR evidence of hardware complication.”
   • Hmmm, ok, I’m reading that as a positive and they haven’t found any hardware complications with my C4 surgery spot. That sounds ok. They did fuse the C4 to the C3 and C5 with titanium screws to prop it back up (they said I might have gotten a smidge taller in the process). So no real new information here, moving on!
3. Mild multilevel degenerative changes throughout the cervical spine as described above, most notable for mild left neural foraminal narrowing at C6-7.
   • I went to Chat GPT on this one (I know, I know, you can pass judgment on me another time, I happen to find it useful to reference and cut down on the crazy google results I get when I try to find answers…)
     1. Mild multilevel degenerative changes: This refers to the early stages of wear and tear (degeneration) on the discs or joints in the cervical spine at multiple levels (more than one location) in the neck. “Mild” means that these changes aren’t severe, but they are noticeable.
     2. Throughout the cervical spine: This indicates that the changes are present in multiple areas of the neck, not just one specific level. As described above: This suggests that the previous part of the report has detailed the specific levels of the spine where these degenerative changes are happening.
     3. The most significant finding is mild narrowing of the neural foramen on the left side at the C6-7 level of the cervical spine. The neural foramen is a space through which the spinal nerves exit from the spinal cord. Narrowing of this space can put pressure on the nerves, leading to symptoms like pain, numbness, or weakness. “Mild” indicates that the narrowing is not severe, but it may still cause mild symptoms.
     4. Further investigation beyond Chat GPT told me that Foraminal stenosis is like what happens to an electrical cord when you shut a door on it, wedging it between the door and frame. Eventually, the pressure on the cord can damage it, affecting how it conducts electricity. Likewise, foraminal stenosis can put pressure on affected nerves. Eventually, that can affect signals traveling through the nerve and cause nerve pain, and sometimes, permanent nerve damage. It goes on to say it’s quite common: Some studies indicate up to 40% of people have at least moderate foraminal stenosis in their lumbar spine by age 60. That increases to about 75% In people aged 80 and older. However, most people with foraminal stenosis don’t know they have it, even when it’s severe. Only 17.5% of people with severe foraminal stenosis have symptoms.
     5. So in the grand scheme of things, this isn’t one of those problems that is rising to the top of the list, and some of the complications will probably be addressed with one of the numerous cancer treatments I’m getting. The internet tells me a cure could be as easy as some solid rest and PT! And as long as I’m symptom-free, I probably don’t need treatment. Whew! 

Lets get back to that “severe pathologic anterior compression fracture of C7, with approximately 80% central and anterior vertebral body height loss.” though. What is that all about?

Turns out the fracture in the C7 isn’t new. I remembered something about the C7 when we were getting all the test results in Louisiana, and there was even a bit about a hole being drilled in the bone by a tumor. What other shenanigans did that tumor get up to down there? That vertebrae was completely overshadowed by C4 at the time. Lets go back.

An MRI on 12/18 reported: There is also a fracture along the superior endplate of C7 with mild loss of height. The remaining vertebral heights are preserved. And interestingly ”Osseous metastatic disease in the lumbar spine and sacrum, with pathologic fracture along the superior endplate of L2. L2 is the back rib where my biopsy was taken, they had mentioned a fracture in that rib, but for the life of me can’t imagine what it was from.

So what happened between December 18 and February 1? I have much more compression in my C7 with 80% loss of height. Lets look at where all these bones and things are in the back. 

Ok, lets break it down: Severe pathologic anterior compression fracture of C7:

• Severe: The fracture is significant or advanced.
• Pathologic: This means the fracture is caused by an underlying disease or condition (like osteoporosis, a tumor, or infection), rather than from an injury or trauma alone.
• Anterior compression fracture: “Anterior” refers to the front of the vertebra, and “compression” means that the vertebra has been squashed or collapsed in a way that it loses its normal height. So, it is a collapse in the front part of the C7 vertebra (the 7th cervical vertebra in the neck).
• With approximately 80% central and anterior vertebral body height loss: This means that the height of the C7 vertebra has been significantly reduced. Specifically, it has lost about 80% of its normal height in the central and front (anterior) parts of the vertebra. This indicates a major collapse of the bone structure in that area.

Yep, I gathered that, so treatment options? What might I expect? 

• The treatment for a severe pathologic anterior compression fracture of C7, especially with significant height loss, will depend on several factors, including the underlying cause of the fracture (like osteoporosis, a tumor, or infection), the severity of symptoms, and the patient’s overall health.
  • Conservative (Non-Surgical) Treatments:
    • Bracing or Collars: A cervical collar or brace may be used to immobilize the neck and provide support during healing. This can help prevent further movement or strain on the fractured vertebra. (already doing that!)
    • Pain Management: Medications, such as non-steroidal anti-inflammatory drugs (NSAIDs), acetaminophen, or opioids (for severe pain), may be prescribed to control pain. Muscle relaxants can also help with muscle spasms. (already doing that!)
    • Physical Therapy: Once pain is managed, physical therapy may help to strengthen the muscles around the neck and improve mobility. This can also aid in preventing further injury and help with posture correction. (I’ll be doing that after the collar comes off)
    • Activity Modification: Rest and avoiding activities that could strain the neck, such as heavy lifting or twisting motions, is often recommended. (definitely doing that)
  • Treating the Underlying Condition (it makes sense that we will probably go this route first):
    • Tumor-related fractures: If the fracture is due to a tumor, treatment might involve chemotherapy, radiation therapy, or surgery to remove the tumor, depending on the type of tumor. (yes, yes, makes sense)
  • Surgical Treatments: (maybe some of this will come up? Now at least I know what some options might be…)
    • Vertebroplasty or Kyphoplasty: These are minimally invasive procedures used to treat compression fractures. In vertebroplasty, a special bone cement is injected into the fractured vertebra to stabilize and strengthen it. In kyphoplasty, a balloon is used to create space in the vertebra before injecting the cement, which may help restore some of the lost height in the vertebra.
    • Anterior Cervical Discectomy and Fusion (ACDF): If the fracture has caused instability in the cervical spine or if there’s nerve compression, surgery may be done to remove damaged or compressed discs and fuse the vertebrae together to stabilize the spine.
    • Spinal Fusion: If the fracture is severe and the vertebra is unstable, the surgeon may decide to perform a spinal fusion, where the fractured vertebra is fused with adjacent vertebrae to prevent movement and reduce pain.
    • Cervical Laminoplasty or Laminectomy: In cases where there is pressure on the spinal cord or nerves, procedures like laminectomy (removing part of the vertebra to relieve pressure) or laminoplasty (surgical modification of the vertebra to relieve pressure) may be performed.

Alright folks, I’m exhausted. That was a good long mid-night run of words and googling and I’m ready to lay down for a while again.

I have a new request of you though! I’ve been enjoying my morning cup of coffee (half decaf, oat-milk latte) with some music. I would love for someone to organize a collective morning music mix that I can listen to when I wake up and feel the coursing black gold running through my veins (bonus points for good dark roast coffee recommendations!). 

I created a collaborative spotify playlist called “Renee’s morning coffee playlist” and I put in one of my favorite morning songs, Three Little Birds by Bob Marley.

When I worked in wilderness therapy the first few years I lived in Bend we would often wake the kids up with a song. Three Little Birds was one of my favorites to sing. I don’t sing, but the sentiment and love in the lyrics seemed to transcend my morning voice. It was a simple pleasure we had out there. The morning song.

Three Little Birds
Song by Bob Marley & The Wailers

Rise up this mornin’, smile with the rising sun
Three little birds pitched by my doorstep
Singin’ sweet songs of melodies pure and true
Sayin’, “This is my message to you”
Singin’, “Don’t worry about a thing
‘Cause every little thing is gonna be alright”
Singin’, “Don’t worry, don’t worry ’bout a thing
‘Cause every little thing’s gonna be alright”

Here’s more technical stuff about it: How To Make a Collaborative Playlist — Spotify

Hopefully, it’s pretty straightforward. I enabled the playlist so that friends can add and reorder tracks. Lets try it out!