1 year ago today I underwent emergency spinal surgery to remove a tumor on my cervical spine. That night in the ICU I couldnāt move my head even a millimeter without the most excruciating pain Iād ever experienced. I had no idea how I would ever recover or walk or use my right arm and hand again. Through intensive OT, PT, chiropractic, and an insane amount of grit, I am still working to regain function and control pain, while learning to live with the consequences caused by the tumor, surgery, and radiation.
Tonight (and every day) we celebrate. We celebrate Life. Being alive. Being home with my family. Being able to walk without an assistive device. Being here to watch my kids grow. To experience simple pleasures in life and continue working towards healing and many more years together. Thank you, God! š Hereās to even better days ahead š
Hi all! Itās been a while since Iāve updated, so thereās a lot to catch up on. All in all, Iāve been doing ok, and am now trying to prepare for scans again in a couple weeks. I had my mammogram this morning, and praise God, it was negative!! Being able to cancel radiation in January was Amazing, and Iāve been taking the time since then to do my best to heal and rest.
I wish I could say itās been easy and Iāve just been sitting around watching my favorite shows, reading for fun, and getting caught up on All the thingsā¦. But it has been quite a different story. Iāve unfortunately continued to have a seemingly endless list of new and changing health issues to deal with. The treatments and medications have left me with so many side effects and evolving problems, that it seems like Iām just constantly trying to find ways to cope with some new, annoying issue each day. Itās really difficult to find a balance between activity and rest, because everything changes day-to-day (sometimes hour-to-hour). I therefore canāt even really get into a routine and itās hard to plan things since I donāt know how Iāll be feeling. Sometimes I feel ok and I can do tasks around the house without much issue; other times I canāt do much other than sit and try to find a way to only minimally be in pain. This has all been a very difficult lesson in forcing myself to rest and constantly remain flexible (2 things I have never been all that great at) š«£
I continue to go to physical therapy and do my at-home exercises. I am still getting stronger since surgery, but it is frustratingly slow progress! I think one of my biggest saving graces has been my amazing chiropractor. Every week I go in with numerous issues, and he always makes me feel so much better (physically and mentally). He is one of my earth angels š
Iām doing my very best to remain hopeful and optimistic despite all the challengesā¦ Some days I expend most of my energy doing so, but getting stuck deep in the pit of despair is my absolute least favorite place to be, so Iām going to continue to fight to stay out of there as much as possible! The amount of effort it takes on a daily basis to work through physical, emotional, and mental challenges is unrealā¦ I am so thankful for family and friends who make it a little easier! Weāve been trying to get outside more with the unseasonably warm weather and have been doing family Mario Kart most nights. Iām still typically the worst racer š (Brandon and the kids had been racing together for quite a while until I was feeling up to it), but we have a lot of fun competing and being silly. The trash talk is also kind of hilarious! š¤Ŗš
My next scans and appointments with Mayo will be March 27-28th. Am I absolutely dreading it? Yes! Am I going in with the highest hopes of miraculous news? Also, Yes!
I will, of course, keep you updated as I am able, and greatly appreciate those prayers, well wishes, and positive vibes! š
Mario Kart time! Mason always alerts me to beautiful sunsets out the window ā¤ļø
Iām also starting to experience some throat irritation, dry mouth, and just general worsening of neck pain and neuro symptoms (denser numbness, increased tingling, burning, pain, etc).
Overall, just feeling pretty crummy. So sick of my body getting beat up and not being able to heal and recover in the ways I want and need. Hoping for some better sleep tonight, and manageable symptoms going forwardā¦ Seems sad to have such a low bar. Iād love to feel fantastic and healthy and vibrant! š and be cancer free!
Itās been a stressful and emotional couple of days with scans and appointments, but Iām finally feeling like I can breathe a tiny bit better now. Yesterday I had a spinal MRI, CT of the chest/abdomen/pelvis, and met with the radiation oncologist who treated the lung nodule back in May. Today I met with my oncologist.
Our day yesterday was quite emotional because when we left the appointments, the doctor didnāt have all the information. Based on what we Did know, it sounded like there was a possibility of recurrence in the spine, as well as several new lung nodules. If the tumor had come back in the spine, there was a good chance I would need to have surgery Again, in addition to radiation, and then we would discuss whatās next for the lungs.
We left her office feeling completely defeated and devastated. It took every last ounce of my willpower to not completely collapse on our long walk back to the car. As soon as we entered the parking garage, I fell apart. I cried and cried and held onto Brandon for I donāt know how longā¦ cars passed and the world went on around us while our world was seemingly falling apart. After pulling ourselves back together, I got a notification that the final chest CT report came back, and it showed NO definite new growths. The lung nodules that have been present have continued to grow but at a similar rate as before. And the lung nodule that was treated back in May has responded well to the radiation! While not great news, it was much better than what we were originally told.
Ok. So now we were looking at āonlyā the possibility of really bad news with the spine. Since my surgery was with a different health system, weād have to wait until the images could get pushed through, and for the team to review and compare to yesterdayās scan.
This morning we met with the oncologist. She said that she talked with the radiation oncologist and surgeons on the team who reviewed the post-op MRI images and yesterdayās results, and there is NOT concern for recurrence at this time! The area they were uncertain about is ājustā post-operative changes in the spine. Therefore, they do NOT think that surgery is warranted again! š Everyone on the team does think that radiation is a good idea, however, to make sure things are ācleaned upā so that surgery isnāt necessary again down the road. The surgeons think that my spine is still healing, but healing well, which was good to hear.
So at this time, it sounds like the plan will be for radiation to start the week of the 18th. Iām waiting to hear back from them about all of that. Treatment will increase inflammation in an area that is already very inflamed, which means pain and deficits are likely to increase for a while. Additionally, because of the location, I will probably have an extremely sore throat and hoarse voice for a while. Theyāll give me medications to help with it. And, of course, worse fatigue! Yay!ā¦ šš
The brightest of spots is that the abdomen and pelvis still look good, so no changes there!! After all of this, the plan is to rescan everything in about 3 months.
Still with me here? Ugh!! It has been a fricken rollercoaster, and Iām over it! Iāve never been a fan of rides!
Iām going to do my best to enjoy the weekend with the kids and Brandon, knowing that with my already limited abilities, I have a lot to try to get done and prepare before radiation starts again. You all know I will do my best to continue updating as best as I can. I appreciate your patience with these updates, as sometimes I really need to rest (physically and mentally) before I can write everything outā¦ aside from taking care of my responsibilities as a human and mom š
Shoutout and thank you to the BP Cancer Group for my t-shirt and all of their support over these past few years. Itās such a fantastic group from my little hometown, and their annual cancer auction is actually going on this weekend! (www.bpcancergroup.org)
Love to you all! Thank you for your continued support. Iām praying and working every day so that I can someday share my miracle story with you all š«¶š
Itās 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 itās 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, āSunny,ā in the hospital gift shop for me š„° 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 ā¤ļøI 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 ā¤ļø 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 šForcing 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 šIn 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 theyād done to my hair in order to complete the surgery š³
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 šµāš«
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.
š Cousins by chance, sisters and best friends by choice š 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 couldnāt find a good comedy on, I would just watch Bluey š„° Reminded me of Sloane and home.. and letās be honest, itās a good show, too šMason picked out these beautiful flowers for me at Costco. They held up for over 2 weeks!! ā¤ļøBeing 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 šThe 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 š¤Æ 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 š«£Realizing they shaved part of my head to do the surgery š„“šAll packed up and ready to go home!!! šš 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, Iām looking forward to the day when I can safely walk without it!
Iāve been home from the hospital for 1 week now. I am extremely glad to be home, but Iād be lying if I said itās been easy. Recovery is still very tough, and Iām 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.
Iām still not able to safely take the stairs on my own, my right leg buckles from time to time, I canāt get my right arm above my shoulder, I canāt 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, Iām still a fall risk, so canāt 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?! Iām so tired of feeling like I canāt trust my body! š¢
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 canāt drive (and wonāt be able to for a while), all the appointments are keeping my mom & me very busy.
Iām 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 friendsā¦ but this shit is Hard. And scary. Iām so sick of being scared all the time, of everything seeming so difficult, and feeling like Iām failing at so much. I want so badly to heal. From surgery. From all the chronic problems Iāve 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 š
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 š 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. Iām 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 Iāve 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 Iāve 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 Iām safely back home, and so very grateful to be here! šā¤ļø
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
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¤
Lauren MG Doyle 