Itās been 2 weeks since I came to the emergency room for excruciating pain and nerve issues. Itās been 10 days since I had emergency neurosurgery to remove a tumor from my cervical spine. Iāve spent the last week doing intense inpatient rehab, and am excited to say that they are currently planning to send me home on Saturday! š
I had intended to post more updates this past week, but the schedule has been intense and exhausting! Some days Iāve only had about 10 minutes to eat lunch š³
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 didnāt 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 Iāll be working my butt off to maximize my potential for recovery!
With that, Iām going to head to bed. I have an early morning and busy day ahead. I could go on for hours with all the information Iād 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 ššš
My babies! š I got to see my babies for the first time in a week! š„¹š Brandon and my parents came with the kids for a visit this afternoon once I finished my first day of therapy. Itās been a very busy day, but my heart feels better after the much-appreciated distractions.
Therapies so far have been good, but tiring. Beginning Monday I will have 3 hours/day of OT and PT.
I got āfittedā for the wheelchair I will use while here, and I was cleared of speech therapy needs at this time.
Taking a few stairs during PT was scary this morning. My knee buckled coming down with the first step, so thatās going to be a big thing to work on. Today was mostly about identifying deficits and needs. Tomorrow is more of a rest day, and then therapies resume Monday. In the meantime, I have things I can do on my own to keep improving my function and mobility.
I feel really good about the rehab team here, and am looking forward to making strides towards independence again. I often feel like a helpless prisoner here. I have a bed alarm so I canāt even sit up on the edge of the bed without calling for help, canāt do anything on my own, have to ask for help for the smallest of thingsā¦ mentally, itās a big added load to everything else. Needless to say, seeing loved ones today was a great distraction from the physical and emotional pain of all of this.
All of your loving and supportive messages are so so appreciated! They lift my spirit and help me to keep pushing. I want to get home safely as soon as I can, and will do everything I need to do. But the quiet, alone time leaves a lot of space for bad thoughts to creep in. I love all the good you guys are leaving here for me, sending me, and texting me. It may not seem like much, but the encouragement and love are truly appreciated! So thank you all š
I made it to inpatient rehab at the Courage Kenny Rehabilitation Institute this afternoon. Itās 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. Canāt get much more motivated than that. Iām 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 couldnāt take more than 2 steps with the walker. My right leg is very weak and uncoordinated. Since then, Iāve progressed to walking (slowly) with a walker to the bathroom, down the hall a bit, and tried a few stairs. Itās all so unbelievably frustrating. The amount of concentration you have to put into literally every muscle being utilizedā¦. My leg wants to buckle underneath me; I know this will get better with time and work, but it is a very scary feeling.
Iām also experiencing significant deficits in my right arm and hand. Itās 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 stickā¦ I know my neck and back muscles have to heal and learn to communicate again. You just donāt 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 Iām exhausted and on a lot of medications, so itās probably time for me to call it a night (you know, try to rest until the next interruption š)
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. Iām trying to stay focused on the step immediately ahead, but itās an emotional process, with lots of tears and fears.
Thank you all for your continued love ššā¤ļø
Graphic warning: Below is a photo of my incision after the dressing came off yesterday šš¼
Hi everyone! Iām 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. Donāt even like thinking about it, but itās weighing heavily on my mind.
The surgeon told me more about the tumorās 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 Iāll need 1-2 weeks of inpatient rehab š„š I will probably know more tomorrow. I tried standing tonight and my right leg is very weak. My knee and ankle didnāt 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 thingsā¦ and the muscles in my back and neck donāt want to let me lift, hold, or move things. Iām 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 Iāll turn a corner, but increased activity will worsen it allā¦
Needless to say, Iām having a hard time with it all š itās so overwhelming. Iām scared of the unknown, the limitations. More treatments to hold me back from getting betterā¦ I miss my kids and home. Iām in pain, unable to perform basic self cares, uncertain of the days/weeks/months aheadā¦ I often feel like Iām 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 š
I feel your prayers and love and they are sustaining me ā¤ļøšš. 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 interruptionā¦ thank you all so much for the continued support. I truly truly appreciate it all!!!! š¤
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 ātrappedā in the hospital since Thursday afternoon when I went to the emergency room for worsening pain and numbness. Thanks to insurance bullshit, I canāt go home over the weekend, or the surgery becomes āelectiveā 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. Iāll refrain from sharing my seething resentment of how insurance dictates healthcare in the U.S. at this time, but Iām 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. Iāve 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 didnāt have an MRI until almost 8pm. I got the awful news a little after 11pm, and then finally got to āsleepā 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 canāt get wide margins when operating in the spine, I will need radiation after surgery to āclean upā any cells that might get left behind. Plans for that are yet to comeā¦
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 knowsā¦
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. Iām tired of being a unicorn in a bad way. Iām ready for these insane odds to work in my favor, to heal, and to live in wellness.
I donāt 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 stuffā¦ 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 heās having to do everything I didnāt 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.
I am sad (and angry) to say: Same story, different day. The scans showed new and enlarging pulmonary nodules again.
All of the nodules previously seen have grown. I also have a new one in my left lung. Previously, all of the nodules were confined to the right lung. The oncologist said there are too many now to hope for surgery as an option, unless of course I develop symptoms or thereās a direct risk to where any of them are growing. Itās sounding like all they will have to offer me is chemo if the nodules continue to grow. Unfortunately, the likelihood of chemo working isnāt great eitherā¦ LMS doesnāt respond well to many chemo drugs. In fact, they donāt even offer chemo for LMS patients in some countries because the likelihood of success is so low.
The anguish is all-encompassing. I am devastated and ANGRY!!! I still cannot wrap my head around the fact that it is 2023 and we still do not have better options for cancer treatments. I have been busting my ass researching and trying all sorts of alternative therapies in the hopes that Something will work. Conventional medicine certainly doesnāt have a fix. Itās infuriating and scary as hell. Itās also incredibly disheartening to see that, despite my best efforts, the cancer continues to progress.
I know that maintaining hope through all of this is vitally important, but on days like today, I struggle to find or hold on to any.
I appreciate all of your continued prayers for me and my family. Iām going to continue researching, consulting, and experimenting, just as I have been doing. Sadly, it feels like my remaining options and time keep dwindling with each unfavorable scan result.
Three years ago today I received a voicemail telling me that the āfibroidā they had removed a week earlier was actually cancer. The past 3 years have been a rollercoaster full of stress and anxiety I never imagined Iād face. But then, who really expects to be dealt such a blow (especially at only 32 years old)?
I know that this date will always trigger a lot of sad and distressing memories for me, but I am going to be doing my best to make sure that my cancerversary isnāt a day filled with bad memories and resentment. Fortunately, the temps got above freezing here this morning, so we took the kids to one of our favorite parks for a walk. While Iāve long enjoyed our family walks, today I tried to pay extra special attention to the beauty of the day, and be grateful to have made it to another milestone. Rather than ā3 years of cancer,ā Iām trying (though itās Hard) to remind myself that itās ā3 years SURVIVING cancer.ā Thank God for that!
This blog has literally been years in the making. I have intended to finally pull the trigger and write my first post many times, but life (and fear) has gotten in the way. Countless individuals have encouraged me to start a blog during the last couple of years, so I want to say thank you to those who have continued to support my writing.Ā
So, why am I here? Why are You here?
Well, maybe you know me and already know a lot about me, and would like to stay up to date on my life happenings. Maybe youāve seen me on social media, or maybe weāre meeting for the first time. Whatever the reasons, I am hoping this blog will help me to streamline the process of sharing updates about my life, while also hopefully providing some inspiration, humor, and/or helpful information to my readers.
What might I be able to offer?
I think my life experiences and circumstances have provided a very unique filter through which to view life and share information.
My husband and I have been married since 2013, and together since 2011. We have 2 wonderful kids and live in the Twin Cities suburbs. I have both a Masterās and a Doctorate and am a board-certified Womenās Health Nurse Practitioner. I also have the student loans to prove it.Ā
In 2019 our lives were turned upside down. Our daughter was born with a serious heart defect that required open heart surgery when she was just 5 days old. A couple weeks after her birth (while she was still in the hospital), I found a mass in my abdomen which required major emergency surgery to remove. At first, we were told it was just a fibroid; we learned about a week later that the mass was a rare and aggressive type of cancer – leiomyosarcoma. Through multiple surgeries and chemo, I have come out the other side, changed in many ways. I am now considered Stage IV, with a chemo-induced heart condition, and struggle with several other severe side effects from treatments.Ā
I continue to work and live and love as best as I can. I will not claim to have all the answers about anything, but I can tell you I have learned a LOT in my 35 years of life thus far. My passion has Always been helping and educating people in whatever ways possible. I am hoping this blog will allow me to do that for a broader population beyond the patients I see at work, share my unique journey, and help keep friends and family in the loop along the way.
Lauren MG Doyle 