Important Updates

We’re still trying to process things and figure out the best path forward, but I was notified on Wednesday morning by Interventional Radiology that they will no longer do the hepatic artery embolization for me. The MRI I had last Friday provided more detail that apparently made them think the procedure wouldn’t be successful or wise to move forward with.

So at this time, no one in conventional oncology has treatment to offer me unless I decide to do chemo. And the pressure to do it is Intense, despite crappy statistics and terrible risks. If I chose to do it, it could take weeks before it worked, and by “worked,” I mean slowing growth, Possibly stopping it. But not making it go away: not the metastases, and definitely not the cancer itself. It would weaken my immune system and entire body, which, I kind of need… and then I would need to continue on that chemo until it stopped working or I couldn’t tolerate it anymore. Then I’d be back in the same boat I’m in now. But even weaker.

Conventional oncology has never had a cure for me. All they hope to do is kick the can down the road a little farther. Well, that isn’t good enough for me. It’s completely unacceptable. Which is why I have been exploring and trying countless alternative treatments for the last few years, and why I continue to do so. I’m working hard to strengthen and heal my body, mind, and spirit despite the enormous financial burden. I won’t get into the asinine world of insurance coverage for chemo but not modalities that Help people Heal or feel Better…

As I said, there’s a lot to process and figure out now. While I’m working and praying for healing, I’m also praying I don’t end up in an emergency situation. It’s a very lonely and scary road to be on, but I refuse to give up or give in to pressures for something I do not think is right for me.

This Thanksgiving, and every day, I am extremely grateful for my husband and his undying support, our wonderful children, families, and friends, the providers and professionals who support and believe in me, God, my angels and ancestors for guiding me, and for each day I get to continue to be here with my family.

I’m on my own path, and while I have no idea where it’s going to take me, I’d rather have this journey than simply jump off a cliff. When I find my way, I’ll come back for others ❤️

7 Weeks Since Surgery

It’s a little hard to believe, but it’s been 7 weeks since surgery. Recovery is going ok, but I’m still trying to come back from radiation and the cardiac event in April, so the overall progress has seemed very slow.

Following the traumatic events of this spring/summer, I found myself in a near-constant state of panic. I was experiencing panic attacks daily, crying multiple times per day, and constantly stuck in an unending doom spiral. The coping mechanisms on which I’d learned to rely over the last few years were no longer seeming to help, and every single stressor became just another insurmountable trigger. I managed 4.5 years of cancer to not need daily medication to manage my mental health; I have had detrimental side effects in the past with all of the meds I’ve taken, so I was very hesitant to even consider trying them again. However, I finally reached a point where I realized I could no longer responsibly try to manage things on my own and had to fight to get prescriptions for new meds that weren’t going to carry the high risks of those I’ve tried in the past. So far, I am thankful to report that the medications are helping, though we are still experimenting and working to find the best current regimen for me.

Medication alone has never been sufficient for me when it comes to my mental health. In addition to self-care/lifestyle factors, I have seen several therapists over the past few years. Unfortunately, I discovered this year that even long-term ones were no longer serving me in the ways I currently need. I finally found a therapist I am comfortable with again, and I have been seeing them 1-2 times/week now.

Since surgery, I have had several other important scans and appointments. Thankfully, the large ovarian cyst and accompanying symptoms have resolved. An MRI of my right (non-operative) shoulder reveals a complete tendon tear in my rotator cuff, and I will likely just be continuing to try to heal that through physical therapy at this point.

I had a cardiac MRI last month to get a more accurate measurement of my heart function following the events back in April. Sadly, the MRI shows my left ventricular ejection fraction was at 44%, which places me in the “mild” heart failure category now. Before chemo in 2019, it was 55-60%, and before this last round of radiation, it was 50-55%. The cardiologist has started me on 2 heart failure medications at this time, but, because I’m also struggling with POTS symptoms and low blood pressure, it’s an extremely tricky balance (all of the possible medications for this type of heart failure lower blood pressure, and one of them is also a diuretic, when I’m already struggling to keep my fluid levels higher due to POTS).

I’ve also been meeting and scheduling consults with additional providers to further expand my integrative approach to health and healing. I am learning a lot, trying my best to not get Too overwhelmed, and working hard to remain flexible and hopeful amongst all the unknowns.

Over the last several weeks I have been doing my best to prioritize my mental health, peace, and quality time with Brandon and the kids. I have been limiting my time and influences on social media, making space for intentional solitude, and trying to do things on my own timeline without judging or shaming myself for doing so. I’m learning to allow rest without guilt and just generally try to free myself of unrealistic expectations (typically self-imposed). While I have been working on it for years, I am focusing hard on prioritizing positivity, practicing affirmations, and minimizing and better managing negative energy – from both my own mind and external sources.

Needless to say, it’s been a busy 7 weeks since surgery. As I’m feeling up to it, I will maybe share some photos of recent events since surgery. We had a nice little (delayed) 11th wedding anniversary celebration, Sloane is back in soccer, and we’ve been trying to do some of our little family traditions again. I’d love to say I’m feeling so much better, but scans are already coming up again in a couple of weeks (how??!!), so I’m having to work extra hard at avoiding the doom spirals right now.

As always, thank you all for your care and continued prayers 💜

Surgery This Week & Many Unknowns

The celebrations and little joys of summer were short-lived.. I only got a couple weeks of feeling human again before I ended up in the emergency room twice in the last week, with lots of unanswered questions and a current plan for surgery this Thursday 😩

The “indeterminate” spot in my left axilla from the July 1 scans has grown quite a bit during the last few weeks, pressing on my brachial plexus and intercostal nerves, causing quite a bit of pain and nerve symptoms. There is also another new, suspicious spot on my left scapula. The hope is to have this all taken care of with surgery on Thursday.

I had to go back to the ED yesterday because of worsening pelvic and groin pain, to find out I have a 6cm ovarian cyst 🤯 After a verrrrrry long day, ovarian torsion was reasonably ruled out and I was allowed to go home.

I’ve also been having new pain in my right axilla/shoulder, but they couldn’t do an MRI yesterday, so waiting to hear back when that can be done.. and need to follow closely for the ovarian cyst (including more imaging and probable consult with gyn-onc), meanwhile praying that it goes away on its own quickly and doesn’t result in torsion or rupture 😩

I continue to be in quite a bit of pain from everything, and the stress and anxiety are through the Roof! I am SO F*ing sick of this rollercoaster of shit!!

I expect to be hearing from a lot of providers in the coming days as we make plans for what’s next. I appreciate prayers for this to all be resolved quickly and easily, for peace and healing. All the plans we had for the remainder of the summer (including our wedding anniversary, the fair, waterpark, walks, etc) are completely shot to shit now. Emotionally, I am not in a good place. I am trying hard to focus on the kids, Brandon, and the little moments of less pain and peace, but they are hard to come by. I want to heal from all of this 😭. I want so badly to be healthy so that I can enjoy life with my family and we can do even simple things together without being insanely stressed or in a lot of pain. The fears and unknowns are terrible. I want to live a long, healthy life with my family. Cancer needs to F* off!!!

1 Year Since Spinal Surgery

1 year ago today I underwent emergency spinal surgery to remove a tumor on my cervical spine. That night in the ICU I couldn’t move my head even a millimeter without the most excruciating pain I’d 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! 🙏 Here’s to even better days ahead 💖

June/July Scans Update

I haven’t been able to muster up the energy to write a detailed update, so this will be pretty brief.

I had my scans and appointments with Mayo over the last couple weeks. Biggest takeaway right now is that I do Not currently need treatment. However, we have to continue to monitor things closely. There is a 2.7cm currently indeterminate lymph node versus metastasis in my left axilla (armpit), and 1 of the lung nodules grew 4mm since mid-April. Thanks be to God, the remainder of the lung nodules have remained stable, and 2 of them actually decreased slightly 🙌

I am still Majorly struggling with debilitating fatigue, shortness of breath, and intolerable to activity. I’m down 20 lbs now and doing everything in my power to get calories in and keep them in. Will be seeing cardiologist again and PCP this next week.

Feeling immense relief and gratitude that I don’t need immediate treatment, and hoping and praying I will get better soon so that I can actually enjoy the summer and do more things that will aid me on my healing journey.

I appreciate your prayers and well wishes. It has continued to be a scary, lonely, and difficult time since radiation. I’m doing my best to focus on the wins here, rather than the unknowns, but it continues to prove challenging each and every day. Stage IV cancer sucks beyond belief, and I’m eternally grateful for my support system 💜

Doing My Best

I have tried to write a meaningful post nearly every day since getting home from radiation, and I still don’t quite know what to say. I don’t have the capacity, nor do I think it appropriate, to lie. However, telling the truth will likely result in people checking in with our family and friends to see if I’m ok, so please let me preface this by saying: I am doing my best. My providers are aware. I have probably tried or looked into the majority of suggestions people have. This is simply what my life is like right now. I am posting because I know people are concerned and/or wondering.

I feel unwell. Physically, emotionally, mentally, and spiritually. It is 2:24pm as I draft this post, and I have not been able to get dressed, do anything with my hair, brush my teeth, or do Anything other than wash my face, eat a few things that didn’t require prep work, and do a few stretches today. Every time I get up to, say, use the bathroom, I am met with this overwhelming feeling of exhaustion, discomfort, and an inexplicable feeling that I Need to sit back down. I’m lightheaded and nearly pass out with standing up, 10 hours in bed isn’t enough, I have horrific nausea and an inability to eat more than a few bites of food without my body rejecting it. Since getting home from radiation less than a month ago, I have unintentionally lost approximately 15 lbs… thus far. I know most of this is muscle mass because I can’t consume enough protein to maintain it.

Every single day is a struggle. When I have appointments, I have to painfully force myself to do things in order to get out of the house, but typically feel worse because I have to keep ignoring my body’s pleas to sit down and stop doing. Once home, I typically cannot get off the couch for usually about 2 hours. Some days I feel better in the afternoons and have maybe 2-3 hours where I can get a few things accomplished. This is usually the time of day when I either get dressed for a few hours, or change into a new pair of pajamas. I’m sure some of you are thinking: That sounds great! Sit around all day in your pjs?! Sure, there are certainly worse ways to spend your day. But this has become my Life as of late, not because I Want to, but because I have no choice, and I am very sad, scared, and depressed. I absolutely cannot tolerate any further aggressive treatments right now. I can’t even tolerate eating food to keep me going each day.

I had another echo and met with a new cardiologist a couple weeks ago. My heart function appears to have declined further since radiation, which is no surprise given what happened. However, before deciding how aggressive we’ll be with treatment, I need a cardiac MRI to ensure we have the most accurate function of my heart. They only have 1 machine and are booked out, so I won’t be getting that done until end of August.

I am in pain, short of breath, intolerant to exercise, lost in brain fog, struggling with horrendous exhaustion, unable to maintain a comfortable body temperature, and still dealing with all the limitations from spinal surgery and radiation. I don’t think it’s necessary to detail it all out, as I’m sure you can begin to imagine how and why my mental, emotional, and spiritual health are all struggling as well.

My next scans and appointments with Mayo are stretched out over the course of a week, which is incredibly annoying… my appointments will be from June 28 through end of day July 3. Great way to head into the holiday weekend here in the U.S.😒😤🙄

I realize this post probably doesn’t sound a whole lot like me… but I don’t feel much like myself anymore anyway. My poor husband and kids have had to watch me struggle to get through each day, to cry and cry because I can’t do the things I want, or even Need to do, and be ok with everything changing More because mom can’t tolerate much of anything. I absolutely Hate having to take life day by day. And after 4.5 years of being forced to do that against my will, now I have to take things hour by hour, sometimes minute by minute. I do not have the luxury of planning anything for the future. As human beings, we thrive on having things to which we can look forward… I have fear and terror of what could happen. With a teeny tiny sliver of hope that I am Really struggling to maintain.

But every day, I get up with the commitment to TRY my best, despite. Hoping and praying that things will start to get better. That I will get better. That I will shock everyone and heal myself.

I don’t know what tomorrow will bring.. I don’t even know if I’ll manage to get dressed today. I am annoyed that it’s taken me an hour to write this post… I forget what I’m saying and doing while I’m in the process of saying/doing, so writing, reading, and talking are all more challenging now, too.

I want to post more, to be helpful to others, or perhaps even inspire.. but lately I can barely help myself, so I guess that’s where I need to continue to focus my energy and attention for now.

Maybe someday soon I’ll figure out how to manage this struggle better, but for now I need to preserve the little bit of energy I have.

Thank you for your prayers. I appreciate them and you. I will continue to pray for and affirm: Better days ahead! 🙏🌻

Catching Up

Hi all! It’s been a while since I’ve updated, so there’s a lot to catch up on. All in all, I’ve 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 I’ve been taking the time since then to do my best to heal and rest.

I wish I could say it’s been easy and I’ve just been sitting around watching my favorite shows, reading for fun, and getting caught up on All the things…. But it has been quite a different story. I’ve 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 I’m just constantly trying to find ways to cope with some new, annoying issue each day. It’s really difficult to find a balance between activity and rest, because everything changes day-to-day (sometimes hour-to-hour). I therefore can’t even really get into a routine and it’s hard to plan things since I don’t know how I’ll be feeling. Sometimes I feel ok and I can do tasks around the house without much issue; other times I can’t 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) 🫣

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 😇

I’m doing my very best to remain hopeful and optimistic despite all the challenges… 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 I’m 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 unreal… I am so thankful for family and friends who make it a little easier! We’ve been trying to get outside more with the unseasonably warm weather and have been doing family Mario Kart most nights. I’m still typically the worst racer 😏 (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! 🤪😂

My next scans and appointments with Mayo will be March 27-28^th. 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! 💜

Mason always alerts me to beautiful sunsets out the window ❤️

Benefit

I’ve had several people inquire about the benefit I mentioned in my last post, forgetting that I have followers who aren’t also Facebook friends 🫣 I apologize, and will share some information here.

Brandon’s cousin’s wife, Ashley, is so very kind to be going to all the work of organizing this for our family. We are really humbled and grateful for all of the support pouring in around it!

The benefit will be taking place on Saturday, November 18th from 4-8pm at the American Legion in Anoka, Minnesota.

I will attach the event flyer here, as well as the link to the Facebook event page. If you have any trouble accessing it, please let me know. This Facebook page is where any updates will be posted leading up to the event. If you have questions about the benefit, you can contact Ashley directly at ashleyeb22@gmail.com

Facebook event page: click here

(I think this link will expire after a certain number of people access it, so if an updated link is needed, please let me know!)

Ashley is also asking that if possible, you RSVP with this Google Doc if you plan on coming. This helps ensure we have enough food and beer, and will speed the line at the door.

It would be so great to see some of you, if for nothing more than to say hello and give you a hug! As a result of COVID, cancer, and Sloane’s heart condition, we have been pretty cautious and isolated for the past few years. We have really been missing our family and friends.

Please do not feel obligated to come, but know that any form of support is absolutely appreciated!!! Feel free to invite/share with anyone else you think might be interested.

Thank you all, and I hope to see some of you there! 💜

1 Month Since Surgery

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 way

Sagittal view of the tumor (white) in my spine

My 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 ICU

Partially 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!!

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!

1st Week Back Home

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 💜