Major Update: Emergency Spinal Surgery Needed

Today is leiomyosarcoma awareness day, so it seems like a cruel joke that I am here to share some tough news. I will be having emergency spinal surgery on Monday for a mass in my cervical spine. The neurosurgeon said that without surgery, the mass could lead to paralysis within a couple weeks. 

I have been “trapped” in the hospital since Thursday afternoon when I went to the emergency room for worsening pain and numbness. Thanks to insurance bullshit, I can’t go home over the weekend, or the surgery becomes “elective” and it will take 1-2 weeks for a prior authorization to go through. Since the neurosurgeon said that without the surgery, the mass could lead to paralysis within that couple weeks, I am stuck here in order to get the surgery as soon as possible. I’ll refrain from sharing my seething resentment of how insurance dictates healthcare in the U.S. at this time, but I’m sure you can guess my thoughts. 

So how did this all come to be? Well, I finished radiation to the lung nodule at the end of May. While undergoing radiation I started experiencing new pain, worsening chronic pain, and sometimes excruciating pain. It made sense that with the restrictive, prolonged positioning on the treatment table and likelihood for referred pain, my right shoulder, back, and upper arm would experience some pain. I did a course of steroids as soon as I finished radiation.. it helped a little, but not as much as I had hoped. I’ve been going to the chiropractor regularly, getting massages, using heat, ice, and Biofreeze, doing daily physical therapy stretches and exercises, and being very cautious with my sleeping positions. 

The pain has fluctuated a lot over the course of the last 6 weeks, but it has overall gotten a little better in regards to range of motion. However, about a week and a half ago, I started noticing numbness along my right radial nerve and altered motor function of my right thumb because of it. I also started getting some numbness in my left leg. Over the past week, the numbness has progressed. I now have mild numbness/altered sensation from my left toes all the way up to my left collarbone. 

I saw a new physical therapist on Thursday and he felt confident we could continue to improve the neuromuscular issues on my right side with various PT techniques. I told him about the left-sided numbness and that I was considering going to the emergency department later that day. After doing his assessment, he agreed that going to the ED was probably the next best step. 

The ED was insanely busy. We got there at 2pm and I didn’t have an MRI until almost 8pm. I got the awful news a little after 11pm, and then finally got to “sleep” on a gurney in the ED at about 2:30am. 

They checked the brain as well as cervical, thoracic, and lumbar spines for the MRI. Thankfully, aside from the cervical spine, the rest of the MRI looked good! However, between C4 and C6 is a 2.6 x 1.3 x 1.0 cm mass. This mass is pressing on the nearby nerves and displacing the spinal cord, subsequently causing all of the sensory issues and severe pain. 

I met with the neurosurgeon yesterday, and the plan is for surgery at Abbott Northwestern this coming Monday. After meeting him, I feel very comfortable with this surgeon. He actually trained at Mayo, and Has experience with LMS! He will have access to state of the art technology during surgery (including neuro monitoring), and I feel confident in his skills. As I feared, since you can’t get wide margins when operating in the spine, I will need radiation after surgery to “clean up” any cells that might get left behind. Plans for that are yet to come…

If all goes well, the surgery is expected to take 3-5 hours. Recovery and rehab will depend on the surgical outcome. Best case scenario, I stay in the hospital 4-5 days, with very strict activity restrictions for the first month, then start rehab, and hopefully back to restriction-free activity around month 3. Add in radiation, and who knows…

The surgeon said that my deficits (numbness, weakness) are likely to worsen temporarily after the surgery given irritation to nerves and spinal cord (which may last for a couple weeks). He said that it is a very serious surgery, but he thinks overall the chances of it being successful and not detrimental are good. 

I am trying to remain hopeful in the face of intense fear and grief. This cancer is aggressive and unpredictable, and I hate it. Only 10 in a million people get LMS worldwide, with 2,000 people diagnosed each year in the U.S. Metastasizing to the breast is not normal for LMS, yet I had that happen. Now this area of the spine is even rarer. I’m tired of being a unicorn in a bad way. I’m ready for these insane odds to work in my favor, to heal, and to live in wellness.

I don’t know what capacity I will have to respond to messages in the coming days/weeks, but please know I will eventually see them all and truly appreciate your kindness. I am grateful for your prayers, good vibes, positive messages, encouragement, support, distractions, sharing of funny stuff… Please help me pray for a successful surgery and recovery. I am scared out of my mind about all of this. I am devastated. I am grieving the loss of most every summer plan we had, I am missing my kids and home like crazy. Brandon is doing his best to be here as much as possible, but he’s having to do everything I didn’t have an opportunity to do thanks to this surprise hospital stay. I know one can never fully prepare for an emergency, but this hurry up and wait (alone, stuck in the hospital) is only adding to the torture of this disease. 

I am ready to move forward. I am ready to heal. I am ready to live in wellness.