Welcome! Thank you for being here! My name is Lauren Doyle. 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 Master’s and a Doctorate and am a board-certified Women’s Health Nurse Practitioner. I also have the student loans to prove it.
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.
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.
Thank you again for being here.
It’s scan day, and I could really use all the prayers, strength, and support you might be able to offer! I have been unbelievably anxious and stressed about these scans. To be honest, I’ve barely been functioning or sleeping. The dread and terror seem to worsen with each scan; unsurprisingly so, considering my last routine scans led to me needing radiation, and the last emergency scans revealed a spinal tumor. If tears and worry could cure me, I’d be all better by now 😔💔
I won’t see the oncologist until tomorrow, so will update when I can 🙏💜
It’s been 1 month since my spinal surgery, and I realized I never shared some of the key photos and information about my stay in the hospital. The past few weeks have been emotionally and physically some of the most challenging of my life. I feel like I keep saying some variation of that during this stupid cancer journey, but it’s true. I would like to declare that I am only accepting joyous, exciting, miraculous, and amazing experiences from here on out, ok?!
Almost 10pm on 7/13/23; 8 hours after arriving in the ED and still no updates. No bed. Just a recliner and folding chair. Axial view of the tumor (white) pushing my spinal cord out of the waySagittal view of the tumor (white) in my spineMy parents brought Sloane to the hospital a couple days after I found out about the tumor, and was unfortunately unable to leave the hospital before surgery (thanks, insurance). Her cuddles, energy, and joy helped immensely. She picked out this little dog, “Sunny,” in the hospital gift shop for me 🥰 She was SO excited about it, and told me I could cuddle him whenever I was scared or lonely. I kept him at my bedside every day in the hospital, and have since getting home, too ❤️I sadly missed Super Soccer Saturday on account of being stuck in the hospital. It was the last soccer day of the season. Mason was so excited to show me his trophy when he and Brandon came to visit that night ❤️ Jess came all the way up to visit me the day before my surgery. Somehow the timing worked out and she happened to be in the state when all of this happened. So grateful for our time together 💞Forcing myself to smile through the tears. 7/16 was our first date anniversary. We had planned to take the kids for a walk and then have lunch at our first date location, as tradition. Instead, I was stuck in the hospital, completely terrified for surgery the following day. Grateful for the amazing partner I met 12 years ago, still always by my side 💙In pre-op, waiting to be taken back. Scared as hell. Thankful for him. The morning after a horrific night in the ICUPartially with it, realizing what they’d done to my hair in order to complete the surgery 😳
Happy to have Jess & Brandon with me, 2 days post-op! Jess even redid my hair, which was no easy task given the amount of sores and scabbing all over my head and scalp from the devices they used to stabilize me during surgery 😵💫
Sitting on the edge of the bed for the first time, trying not to fall over. My head felt like a 200 lb lollipop on a wet stick for almost 2 weeks.
💝 Cousins by chance, sisters and best friends by choice 💝 This woman continues to support me every single day. She listens to me bitch and cry and somehow continues to have patience and love for me every dang day. Walking in the hall, post-op day 3. Scary and painful as hell.Sometimes when I couldn’t find a good comedy on, I would just watch Bluey 🥰 Reminded me of Sloane and home.. and let’s be honest, it’s a good show, too 😏Mason picked out these beautiful flowers for me at Costco. They held up for over 2 weeks!! ❤️Being in the hospital is so incredibly lonely (despite the billions of interruptions during the day). One of my very best friends, Joy, came to visit me one day. It felt Amazing to forget about all the hospital and cancer stuff for a little while, and just feel like I was having coffee with my girlfriend 💖The rehab unit had a little deck; Brandon was finally able to take me out onto it one night. It was my first fresh air in 11 days 🤯 The deck had lots of beautiful planters, with plants, flowers, and vegetables growing.This was my first wheelchair while in rehab. I later got an electric one which gave me the ability to drive myself to and from therapy appointments each day. Feeling like a different woman! I finally got my hair washed (with lots of help from the OT) for the first time since surgery!! It had been 9 days 🫣Realizing they shaved part of my head to do the surgery 🥴🙁All packed up and ready to go home!!! 🙌🙌 After being in the hospital for 16 days, I was more than ready to get out!! So happy to be in the car, going home! My rollator goes everywhere with me now when I leave the house. As nice as it is, I’m looking forward to the day when I can safely walk without it!
I’ve been home from the hospital for 1 week now. I am extremely glad to be home, but I’d be lying if I said it’s been easy. Recovery is still very tough, and I’m finding it difficult to not overdo it. I see all the things that need to be done, I want to go back to normal, and absolutely hate being helpless with so many things. There have been a lot of tears due to frustration from my deficits and limitations, and all too often, the gravity of everything that has transpired over the last few weeks hits me like a ton of bricks.
I’m still not able to safely take the stairs on my own, my right leg buckles from time to time, I can’t get my right arm above my shoulder, I can’t lift or carry anything over 10 lbs, I still have a lot of pain, and my right hand/arm can barely pick up or hold anything. Part of me knows that I just had major surgery less than 3 weeks ago, but another part of me just wants to go back to normal life.
I had to get a 4-wheel walker to take anytime I leave the house. Besides providing a place to sit if I need to rest or conserve my energy, I’m still a fall risk, so can’t take my chances walking far without it. During my final inpatient physical therapy session last week, I had a fall. We were outside walking on different surfaces, testing my abilities and endurance. During our last lap around the block, my knee buckled without any warning and I fell straight down on my butt. It was physically painful, but I think my pride was hurt even more. How, on my very last day of therapy, could that happen?! I’m so tired of feeling like I can’t trust my body! 😢
I had my first outpatient OT appointment this past week, and will be seeing them twice weekly going forward. I have my first outpatient PT appointment this coming week, as well as follow-up with the neurosurgeon. Since I can’t drive (and won’t be able to for a while), all the appointments are keeping my mom & me very busy.
I’m doing my best to focus on whatever good I can find in my day, on the kids and Brandon, and the encouraging words from family and friends… but this shit is Hard. And scary. I’m so sick of being scared all the time, of everything seeming so difficult, and feeling like I’m failing at so much. I want so badly to heal. From surgery. From all the chronic problems I’ve been burdened with over the last few years since diagnosis. From cancer.
Good health is so easy to take for granted. Life is easy to take for granted. Count and appreciate your blessings. Thank you all for being some of mine 💜
I made it home!! I was discharged from the hospital Saturday morning, and got to go home for the first time in 16 days! I am very happy to be out and back with Brandon and the kids again! Now I need to be careful not to overdo it with all the unpacking & laundry, in addition to the things I want to do 😏 I can say my own bed has never felt so good!!
Outpatient therapy will start this week, and I have lots of exercises and stretches to work on in the meantime to progress in my recovery. I’m still waiting to hear back from Mayo about their final recommendations on next steps. Trying not to think too much about it all, because it instantly puts a weight in my stomach and a dark cloud over my day.
As excited as I’ve been to get out of the hospital, it was very hard to say goodbye to my rehab team on Friday. My doctor was truly one of the best I’ve ever met: both professionally and personally. My lead OT and PT were pure gems. I cried saying goodbye to all of them.
I will continue to update through my recovery, but wanted to take a moment to let everyone know that I’m safely back home, and so very grateful to be here! 💜❤️
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 💜💜💜
My babies! 💞 I got to see my babies for the first time in a week! 🥹💗 Brandon and my parents came with the kids for a visit this afternoon once I finished my first day of therapy. It’s 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 “fitted” 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 that’s 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 can’t even sit up on the edge of the bed without calling for help, can’t do anything on my own, have to ask for help for the smallest of things… mentally, it’s 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 💖
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!!!! 🤗
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.
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 there’s a direct risk to where any of them are growing. It’s sounding like all they will have to offer me is chemo if the nodules continue to grow. Unfortunately, the likelihood of chemo working isn’t great either… LMS doesn’t respond well to many chemo drugs. In fact, they don’t 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 doesn’t have a fix. It’s infuriating and scary as hell. It’s 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. I’m 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.
Lauren MG Doyle 