Post-Op Day 5

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 💖

Post-Op Day 4

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 👇🏼

First little walk down the hall, post-op day 3

Post-Op Day 2

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!!!! 🤗

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.

Scan Update

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.

Helping Others During Times of Crisis

We have been incredibly fortunate over the last few years to be on the receiving end of a great deal of kindness and generosity. From family to friends to complete strangers, people have offered up support in incredible ways to our family. Everything has meant so much to us and has made the numerous crises we’ve faced more manageable and bearable.

Most of us have either faced our own crises or witnessed a loved one go through their own. These events can leave us feeling stressed, lost, helpless, and possibly very alone. I thought it might be helpful to share some ideas for anyone who may need them someday, including ways to make it as easy as possible for those on the receiving end.

Financial support

When a major crisis strikes, one of the top worries for many people will be money. Time away from work, lost vacation, and associated bills/costs may all be a problem. Sloane’s open heart surgery, my surgeries, chemo, scans, and appointments have all required SO MUCH time away from work – obviously for myself, but also for my husband and our family. Suddenly there is a decrease in income, a MAJOR increase in expenses, along with the world being turned upside down. Simple things like going to the grocery store, making meals, and doing fun things with the kids become luxuries.

Needless to say, for many people (though not all), any type of financial support may be incredibly helpful. If you’re not sure, it’s ok to ask! Just beware, it’s normal for people to decline help: No one likes to feel needy or helpless, even if they could legitimately use the help. It honestly took us quite a while to accept my cousin’s kind offer to start a GoFundMe account for us… we finally decided to do so because so many people were asking if we had one. We had no idea so many people would want to help us!

If you are going to gift money, there are a variety of ways to do so. Perhaps you could help set up or share a fundraiser, or help spread the word about another preferred payment method. Platforms like GoFundMe are a great way to streamline updates and quickly spread the news, but they do take a small portion of the donations. Cash, check, gift cards, or direct money transfers through methods like Venmo and Apple Pay are generally quick and easy, without any associated fees.

Food

In our experience, and in many others’ I’ve seen, one of the next most helpful means of support is food. When we’re in crisis mode, the last thing we want to (or can) think about is preparing a meal; and when there are kids involved, you know it’s an even bigger chore! Nowadays there are so many delivery services available, but this of course depends on a person’s location. If you know the person’s favorite restaurants, grocery stores, or delivery services, simply sending them a gift card so they can order their own food on their own time is super slick for you, and probably most convenient for them. People have such a wide variety of dietary preferences and restrictions, so this is a pretty safe way to ensure they can get just what they want when they need it. You may have the desire to order food for someone, thinking it will make it easier for them, and for some people, this may work. However, for a family, it’s probably easiest to allow them to do it themselves and just gift them a gift card or money.

One really cool food delivery option we learned about through a very kind gift is a website called Spoonful of Comfort (www.spoonfulofcomfort.com). They offer gift selections for different occasions and ship all over the United States. Each package comes with a variety of options to choose from, and FYI: their triple chocolate chunk cookies are some of the best cookies I’ve ever had! There are an increasing number of these food delivery services, which is really fortunate for those who may not otherwise have access.

If you live close by and want to bring some type of food, my advice is to check on dietary preferences/restrictions and have some options in mind. When someone is in crisis mode, the last thing they want to do is think of a meal for someone else to make for them… it might make them feel like they’re asking too much, and honestly, might add more stress. My advice would be to offer some specific options, and see if any of them sound good to them. Preparing a simple, ready-to-bake meal with all the fixings and sides can be incredibly special, and best of all, easy for them! Think: some type of pan meal that can be warmed up in the oven, pre-cut and cleaned veggies, fruit, or a salad ready to be thrown together. Anything you can do to reduce prep work is going to be super helpful! Lastly, if you’re planning on dropping off the food, please consider offering the option to drop and go. If they can and/or want to visit, great! But that obligation to entertain or talk may seem like a burden they are not ready or able to take on. Remember, the goal here is to lighten their burden, not create new ones.

Gifts

It is unlikely that anyone facing a crisis is expecting gifts. However, I recommend considering gifts that are either practical or genuine and personal if you’re feeling called to send something physical. I will be writing a separate post that will go into more detail about specific ideas, but care packages or items you know will provide some comfort or ease into their day can be especially meaningful.

Support

Helping someone during a crisis does not require you to reach into your pockets. Consider reaching into your heart. Send a handwritten card, a text, or an email. Share some love, support, inspiration, or hope. Pray. Lend an ear. Be patient. And it never hurts to offer up the magical words, “No need to respond.” I have personally gained so much strength from the kind and supportive messages I’ve received from people over the years. Unfortunately, I don’t often have the time or energy to respond (or respond as fully as I’d like) to every message. To be on the receiving end of “No need to respond” feels like a warm hug. I know they understand I would reply in depth if I could, and that I will if I get the chance, but that burden has been lifted from my already-heavy shoulders.

If you find yourself in a position to help others and you have the ability to do so, I hope this post can be of help to you. This is by no means an exhaustive list, and I will plan to share further details in a later post, as mentioned above.

Sometimes life is exceptionally hard and unfair, but it is absolutely easier to face the dark days when you know you have the support of others holding you up.

🌻Be the reason someone smiles. Be the reason someone feels loved and believes in the goodness of people. -Roy T. Bennett🌻

3 Year Cancerversary

Three years ago today I received a voicemail telling me that the “fibroid” 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 I’d 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 isn’t 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 I’ve 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 “3 years of cancer,” I’m trying (though it’s Hard) to remind myself that it’s “3 years SURVIVING cancer.” Thank God for that!

🌻Look how far I’ve come🌻

Suffering

Suffering. Sometimes when you’re in the thick of it, you can’t see past your own nose. The world is unfair, and no one understands you or your situation. You’re wondering why God or the universe is punishing You! Why not someone else more deserving of punishment?!

Sometimes, when you sit with the suffering long enough, you begin to look out and see that many others are also suffering. Yes, the world is unfair sometimes. No, no one truly Does understand your unique situation or personal level of suffering. But maybe this isn’t about punishment. Maybe this is just part of the human experience, and how wonderful to have the capacity to help ease another soul’s suffering.

We’re all suffering a little bit, aren’t we?… Some much more than others, and we’re all in different phases of dealing with it. I know I can swing between cynical and compassionate multiple times on a particularly tough day!

While we can’t (and shouldn’t) always be the ones tending to others’ suffering, wouldn’t it be wonderful if we could each help alleviate a little of someone else’s suffering any chance we can?

Think about the last time you eased someone’s suffering. When was the last time someone did that for you?

My job requires me to have a llllllot of compassion for others. Fortunately most days I am keenly aware of my patients’ suffering, and I’m able to listen, sit with them through it, and help problem solve. Is it always easy? Big no! But I’m all too familiar with what it feels like to be a scared patient and parent and need more than anything for my health care provider to truly be there with me and for me. Even if I can’t always get that as a patient, I do my best to be that provider whenever possible.

The world can be a scary, stressful, and uncertain place; do the world (and yourself) a favor, and take the opportunity to help ease someone’s suffering when you can. You might even be surprised to find that you’ve helped yourself the most in the end.

🌻Be kinder to yourself. And then let your kindness flood the world🌻

Welcome!

Thank you for being here!

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.

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 you’ve seen me on social media, or maybe we’re 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 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.

🌻Expect miracles🌻