It’s been 2 weeks since I came to the emergency room for excruciating pain and nerve issues. It’s been 10 days since I had emergency neurosurgery to remove a tumor from my cervical spine. I’ve spent the last week doing intense inpatient rehab, and am excited to say that they are currently planning to send me home on Saturday! 🙌

I had intended to post more updates this past week, but the schedule has been intense and exhausting! Some days I’ve only had about 10 minutes to eat lunch 😳

The rehab team has been great, and my rehab doctor is just Fantastic! I will be sad to no longer have their services following discharge. Next week I will transition to outpatient rehab.

I hope to post more details about my rehab once I have a bit more time and energy. For now, I will say that I am still dealing with quite a bit of pain, muscle spasms, numbness, as well as sensory and motor issues. My right arm and right leg are most significantly affected. I am currently unable to lift my right arm above my shoulder, and my right hand is significantly impaired. Being right-handed, this makes activities of daily living especially challenging and frustrating. My right leg is still struggling, but the progress has been reassuring. Even on Monday, my knee would buckle coming down a couple steps. Today I took an entire flight of stairs (slowly, with the railing and a guard) and my knee didn’t buckle once!

It could take another 12-18 months before I know what the remainder of my progress and recovery will truly look like. This is so overwhelming, but I know it also leaves a lot of room for improvement. You better believe I’ll be working my butt off to maximize my potential for recovery!

I’m doing my best to focus on the progress I’ve made, not the mountain to climb and all the uncertainty that comes with spinal surgery. Of course, as if it isn’t already enough, I’m also waiting to hear back from my oncologist about their recommendations for next steps, which will likely include radiation to the spine 😖😩

With that, I’m going to head to bed. I have an early morning and busy day ahead. I could go on for hours with all the information I’d like to share, and will do my best to update when able. I knew this program would be the best option for me to get better as quickly as possible, but had no idea how intense it would really be!

Thank you so much for all of the continued love 💜💜💜

I made it to inpatient rehab at the Courage Kenny Rehabilitation Institute this afternoon. It’s continued to be a whirlwind these last couple of days. Tomorrow I will begin intense rehab (physical, occupational, and speech therapies) for most of the day. Sunday will be a bit of a break, and then the intense schedule starts again Monday. My stay here will depend on my progress in the coming days. My goal is to get as strong as I can as quickly as possible. I miss my independence, my home, and family. Can’t get much more motivated than that. I’m glad I was approved to get here tho, as I know this is going to be the quickest and safest way for me to go home as ready as I can be.

From a neurosurgical perspective, they are really pleased with my healing thus far. I got my surgical bandages off, drain out, and no more IVs. Just trying to find the best pain management program while I increase activity.

Wednesday night I finally stood up at the bedside, but couldn’t take more than 2 steps with the walker. My right leg is very weak and uncoordinated. Since then, I’ve progressed to walking (slowly) with a walker to the bathroom, down the hall a bit, and tried a few stairs. It’s all so unbelievably frustrating. The amount of concentration you have to put into literally every muscle being utilized…. My leg wants to buckle underneath me; I know this will get better with time and work, but it is a very scary feeling.

I’m also experiencing significant deficits in my right arm and hand. It’s incredibly weak, a lot of numbness, and tough with gripping/grasping things. Having to learn how to use my left hand for a lot of stuff now.

My head feels like a 200 pound lollipop on a wet stick… I know my neck and back muscles have to heal and learn to communicate again. You just don’t realize how much you utilize certain muscles and do things unconsciously until you have to think through every teeny tiny painful step. Everything seems to be working so slowly, and I need to really focus on every task at hand. Looking forward to continued improvements and healing.

There is so much more to say, but I’m exhausted and on a lot of medications, so it’s probably time for me to call it a night (you know, try to rest until the next interruption 😏)

While my days are going to be more full with therapies for a while now, I still appreciate all the love, support, distractions, and prayers. It is so tough being stuck in a hospital, having independence taken away, and being so helpless. The road ahead seems so long and daunting. I’m trying to stay focused on the step immediately ahead, but it’s an emotional process, with lots of tears and fears.

Thank you all for your continued love 💜💛❤️

Graphic warning: Below is a photo of my incision after the dressing came off yesterday 👇🏼

Hi everyone! I’m alive and starting to feel like a human being again!

The past few days have been a complete, unending blur of chaos. So many tears, so much pain, so much stress.

I was transferred out of the ICU Tuesday evening and am now on the regular neuro medical/surgical unit.

My neurosurgeon came in to see me this morning. A (tortuous) MRI last night shows they got everything during surgery, but radiation is still recommended: maybe in another month or so once I have more time to heal from the surgery. Don’t even like thinking about it, but it’s weighing heavily on my mind.

The surgeon told me more about the tumor’s involvement of the spinal cord and nerve root. My spinal cord is still swollen, which is expected, and causing some of my sensory and motor problems. The C6 nerve root was a little invaded by the tumor and those right upper extremity sensory nerves were stretched over the tumor. So I May have lasting effects on the right arm/hand, but should see some improvement with help. At this point PT and OT have to do their evals, but he seems pretty sure I’ll need 1-2 weeks of inpatient rehab 😥😓 I will probably know more tomorrow. I tried standing tonight and my right leg is very weak. My knee and ankle didn’t want to cooperate or support me very well. My right arm and hand are also weak, with some numbness, making it tough to push buttons, use my phone, open or hold things… and the muscles in my back and neck don’t want to let me lift, hold, or move things. I’m needing a LOT of support, and even though my husband is a saint, I hate being so helpless with literally everything!

The neurosurgeon said pain is going to continue to be tough, and maybe tomorrow I’ll turn a corner, but increased activity will worsen it all…

Needless to say, I’m having a hard time with it all 😭 it’s so overwhelming. I’m scared of the unknown, the limitations. More treatments to hold me back from getting better… I miss my kids and home. I’m in pain, unable to perform basic self cares, uncertain of the days/weeks/months ahead… I often feel like I’m in an alternate universe or very bad dream.

Jess was able to visit today and help me try to fix my hair, try to work out some of the awful scalp scabs from the surgical positioning devices, and cheer me up. I am so thankful the timing worked out for her to visit before heading back home 💞

I feel your prayers and love and they are sustaining me ❤️💜💛. For as many interruptions and noises there are in a hospital, it is a lonely ass place. Going to try to rest now for a bit before the next interruption… thank you all so much for the continued support. I truly truly appreciate it all!!!! 🤗