1st Proton Radiation Complete

I finally completed my first proton radiation treatment today. It’s been a rough week with continued unexpected hurdles. There was unnecessary stress simply getting insurance approval for this type of treatment. Then once that was figured out, we went down to Rochester on Wednesday prepared to begin, but the pre-treatment scan showed the lung mass grew and changed enough that the whole plan needed to be reconfigured. I have been devastated and disheartened. How could the stupid spot change That much in less than 2 weeks?! So we were sent home after I’d already been locked into the table and mask for a painfully long time. Unfortunately, they weren’t able to get the new plan recalculated for today’s treatment, but in talking with the radiation oncologist, it seemed to make more sense to just start attacking what we Could to avoid further delays. By next Tuesday, we should have the updated plan ready to go for treatments going forward. At this point I’m not sure how many total treatments I’ll need. The original plan was for me to be done on November 18th; now I’m not sure. The schedule is such a mess, it changes all the time, and it’s making it nearly impossible to plan the hundred other appointments I need to squeeze in, not to mention all the driving back and forth, the usual to-dos, and trying to spend time with the kids… oh, and, rest?!?

I want to be done with oncology. Forever. I want this all to be a distant memory. To be healed physically, mentally, emotionally, and spiritually. To be living a life outside of constant terror and fear.

In the meantime, I’m diving into some aggressive healing therapies I haven’t tried yet. Cost and time have been the biggest barriers, but damn it all to hell at this point! I want to live!! I want to heal!! I’m doing Everything I can to be here as long as I possibly can, to have a Good quality of life, and Enjoy it with my husband and kids!

We appreciate your prayers and support for peace, healing, calm, love, and divine guidance as we continue this journey 💜

More Radiation Needed 🥺

This past week has been incredibly stressful as we’ve had to navigate yet another shit storm of cancer.

I need radiation to an aggressive lung nodule in my left upper lobe. We’re going to try proton therapy this time, in the hopes that it will cause minimal collateral damage to my heart and other vital structures. We’ll also be attempting every other day treatments, and playing around with my meds to see if we can avoid a terrifying cardiac episode like last time 😓 The plan is start October 30 (the day before Sloane’s birthday 😢).

I’ve been exploring some new possible ways to strengthen my system in preparation for more treatment, and desperately trying to keep my mental health in check. Terror, grief, despair, anger, sadness, depression, anxiety, panic… they don’t even begin to describe the emotions constantly swirling in my mind. I keep saying, no human is meant to deal with this much trauma for this long. Knowing that the trauma and stress are further weakening my ability to heal is a complete mind F*! It’s all just a swirling labyrinth of shit.

As usual, I am inundated with more possible avenues of action. Drugs, herbs, protocols, therapies, confusing and conflicting research every which way… the stress of it all is beyond overwhelming. And NO ONE knows the answer. But the overwhelm needs to be managed, because that is also delaying healing 🙄🙄😤

Complicated and frustrating don’t even scratch the surface. This is beyond maddening.

I am asking God, the Universe, my angels, ancestors, and my prayer warriors: Please lift us up as we move forward through the continued unknown. I want to Heal!!! I am meant for more!!

Every day I affirm: I am healthy. I am whole. I am cancer-free.

I believe there are better days ahead. I am trying to allow, rather than chase, the positive vibrations and outcomes I desire. But fear rears its ugly head and I struggle to keep moving forward.

None of this has gotten easier. The trauma and terror have become familiar, but they are not my friends. My mind and body are trying to protect me.. but at what cost?! I want to live. Heal. Flourish. Thank you God, angels, and ancestors for continuing to guide the way ❤️‍🩹

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 💜

Made it Through Surgery!

Made it through surgery and am back home! Dealing with quite a bit of pain, soreness, and grogginess still. Overall, feeling relieved that it’s over, the mass is gone, and that I am still able to use my left arm and hand (tho currently limited from the pain and bandages). I’m not even 100% sure where the incision is, exactly, as the huge bandage is covering it all up. Have to keep this on for 5 days, then replace for another 5 days. The mass was in the axilla, kind of against the chest well and scapular muscles. It was pressing on the brachial nerve plexus, so I’m very hopeful that these awful nerve symptoms will improve as I heal 🙏🤞

The surgeon wasn’t able to locate the small scapular spot that showed up on the most recent MRI, so we’ll just have to watch that area and pray it is nothing and goes away on its own 🙏

Also still dealing with pain and discomfort from the ovarian cyst, but have had some moments of improvement amongst the pain, so also praying that resolves on its own! Still trying to get follow-up coordinated for that.

I really appreciate all your prayers, well wishes, and check-ins. Hoping I sleep well tonight! Last night only afforded me about 3.5 hours of sleep 🥴

Love to you all!! 🩷

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! 🙏🌻

Answered Prayers!

Guess what! I got to cancel radiation!!! 🙌

I went through the full simulation process yesterday, ending the day with a chest CT. I didn’t get the results until evening, and then had to wait to talk to the radiation oncologist today. I’m still waiting to hear back from my oncologist about next steps, and have received some confusing and unclear information about the details, but here’s the long and short of it: Over the last 6 weeks 1 lung nodule has continued to grow, 1 has DECREASED in size, and the rest have remained stable 🤯 This is typically unheard of without traditional aggressive therapies, so we are Incredibly excited, hopeful, and cautiously optimistic! The self-experimentation and hitting my protocol hard seem to be working!!! 🙏🤞

I asked the radiation oncologist what she thought about radiation at this point, and she essentially said that because the nodule isn’t a big threat right now, I could cancel treatment… so you better believe I did! 😂🥳

I still have no idea when I’ll go in for my next scans, or if I need to consult with anyone else in the near future for the one nodule that grew, but for now, I at least know that I do not need to do radiation next week! 💃🏼

I couldn’t get an appointment with my oncologist until the 31st, so it may be a while before I have any additional details to share. My head has been spinning all day… trying to grasp reality, but for once, in a good way… I’m very excited to (at the very least) be able to delay treatments. But I’m working for Total Healing, and will continue to do the work to get there! I know your prayers, positive energy, and support are all helping me get there, too!

Thank you all! Thank you, God! 🙌💖