Proton Radiation Complete + Updates

Proton radiation is finally complete! I finished my 8th treatment today and am very glad to be done! The treatment area is tender, tight, and sore, and the increased fatigue has been noticeable.

I’m doing my best to focus on the achievement, but the victory feels short-lived, as I have to go back on Friday for an abdominal MRI. I am also scheduled to have a procedure called a hepatic artery embolization on December 9 to deal with the 2 large liver lesions. I had hoped for the possibility of a non-invasive option, but I’m unfortunately not a candidate for that procedure at this time. The embolization will require a hospital stay, and side effects and recovery could last up to 10 or so days. The hope with this procedure is to cut off blood supply to the masses, so that they die… sometimes patients need more than 1 procedure to make this happen. I am really nervous about it all, but relieved to have an option that is less detrimental than another major surgery or more radiation.

I have barely had a chance to think about or plan for Christmas. We still have our Halloween decorations up. Normally by now we’re done decorating, wearing our Christmas jammies, and watching holiday movies. To be honest, it’s been tough to get in the spirit this year… it’s been a non-stop tsunami of crap these last couple of months, and it unfortunately continues. I can barely keep my head on straight.

Still praying for a Christmas miracle to be cancer-free. Healed. Healthy. Home and happy with my family. 🙏❤️

Radiation #6 Complete

Bittersweet completion of radiation treatment #6 yesterday. As I tried to awkwardly hold up 6 fingers in the dressing room mirror, tears welled up in my eyes. I didn’t get much sleep the night before, as I had learned right before bed of the sudden passing of a very important person in my life.

Renee Felchle Burns was one of my biggest supporters and cheerleaders these past few years, but her impact went back to my childhood. Renee was one of my teachers, and had an incredible influence on my life. She saw something in me few others did or bothered to mention. To this day, I still have some of the work she graded because her words of encouragement and praise were so powerful. When I began documenting my journey with cancer, Renee immediately understood and appreciated the cathartic nature of being able to write it all out, and encouraged me to continue to do so. While it has helped me keep people up to date more efficiently, the writing process is also therapeutic, and she recognized that.

As many have probably witnessed if you’re on Facebook, Renee was a consistent presence in my comments, offering her love, praise, support, and prayers every single time. There’s no way to know how many prayer chains she initiated or how far a reach her shared posts had. She would check in on me when I’d be silent for longer periods, and I could always feel her true love coming, no matter what.

Every day as I lie locked onto the radiation table, I feel my angels and ancestors surrounding me. I keep my eyes closed and envision their love enveloping and protecting me during the long process. Yesterday I felt a new strong presence in that room. While I will Greatly miss Renee’s messages and comments on my posts, I know her support and love are unending, and that provides me a small amount of peace.

I also know that so many people are feeling her loss right now, which speaks to the loving person she was. I’m praying for Renee’s husband, family, friends, and everyone impacted by her passing. She was truly an incredible woman, and I am blessed to have known and loved her ❤️

Scan Updates 💔

This past week’s scans did not go as we had hoped. Far from it, actually. Despite my best efforts, the cancer has progressed. I now have 2 significantly sized lesions in my liver, and a couple more questionable spots elsewhere. It’s been a difficult week of extremely difficult discussions and emotions.

I had my 3rd radiation treatment on Thursday. Once this round is complete (still currently scheduled for a total of 8 treatments), the road is murky. Due to the sizes of the liver lesions, they are not good candidates for interventional radiology procedures or radiation. I am awaiting a surgical consult with the surgeon who did my last abdominal surgery. While I have no interest in going through a 3rd massive abdominal surgery, if these spots are even resectable, it may be necessary.

I met with my oncologist yesterday to have a discussion I’ve been fearing for years. We have reached a difficult point in my health care plan: whether or not to do chemo again. There is no cure for leiomyosarcoma. I have known this all along. Every patient is different, however. Some need a surgery or a few treatments, they reach stability or a state of having no evidence of disease, and they can stay there… sometimes for years, sometimes indefinitely. I have always intended to be one of those patients. Unfortunately, these last several months have shown acceleration of disease I’ve never had, and it has continued to get worse.

Conventional oncology here in the US can offer surgery, radiation, chemo, and sometimes interventional radiology procedures to remove, slow, or stop lesions. But they have no way of making it go away for good. None of these treatments get to the root cause, nor can they attack circulating or cancer stem cells. It’s essentially sustaining a game of whack-a-mole as long as you can. The final Hail Mary can sometimes include chemo. We discussed this in depth yesterday.

In my case, the goal/hope with chemo would be to stabilize existing spots and hopefully stop new spots from popping up. This is best case scenario. There would be a small chance of decrease in size for existing spots, but it isn’t the usual outcome for LMS patients. None of this is news to me, but it was good to get confirmation and better understand the realistic expectations.

If there was stability or shrinkage and I was tolerating the treatment, then I’d just stay on it indefinitely until it stopped working or I no longer tolerated it. So, essentially, once you get on that chemo train, you stay on it until it derails, then try another train, until that one derails or you don’t tolerate it, etc, likely indefinitely. Meanwhile, the train is dragging you beneath it, beating you up the whole way… and after how poorly I tolerated chemo the first time, and how weak I have already been these past several months, the idea sounds terrifying and frankly not safe.

My oncologist understands why I am hesitant to do it, and said that whatever I decide, she will support me however she can and that she wishes she had more and better options to offer me..

I don’t know that I want to board the train. I have to weigh the known high risks with the possibility of stability, but only with continued use, and only if I tolerated it…

It has very much come to the point now where I need to figure this out on my own, receive God’s blessings of a tremendous miracle, or this may be the beginning of the end.

Brandon and I have been working hard together to review my protocol, going back through all our notes and prior ideas… things I’ve tried that could be modified or restarted, things we hoped I wouldn’t need to resort to, continuing to think outside the box and prioritize as best we can. I’ve been going back and forth with my integrative team, bringing new providers and therapies on board for the last few weeks… we are feeling like we still have some solid ideas that all have research and/or strong anecdotal evidence to support… but it is scary as F!!!!!!!! And expensive!! Insurance doesn’t pay for wellness, unfortunately 🙄😤. And the stress?? There is no way to describe it.

These past few weeks my priority in choosing therapies and regimens has been Wellness. How can I not just “attack” cancer but also Deeply HEAL my body and mind! I continue to read stories of miraculous remissions to give me a dose of hope to keep going. I look at my husband and kids and it GUTS me to think about leaving them behind. So through the tears and heartbreak I keep researching, keep reading and experimenting on myself. Praying to God, my angels, and ancestors to Please guide me! Please heal me! Please help me so that I can be here, healthy, to live a long life with my family.

I am terrified of the possible pain and suffering, but I’m not a stranger to that. I don’t need to be told I’m strong. I Know I am. And I don’t want to have to be! I’ve been strong long enough!! But the thing that haunts me the most is the thought of leaving my family when we still have so much life to live together.

I am not asking for anything right now, but pretty please don’t put the onus on me to tell you how you can help.. I so VERY much appreciate the offers, but in all honesty, I can barely get through the day, and I don’t have the mental capacity to try to think anymore than I already need to. If it moves you, please join me in prayer. We are continuing to spend a lot of money on experimental therapies. We are driving long distances most days so are going through a lot of gas and wear and tear on the car. I am trying to eat as healthfully as possible, but our schedule is chaotic and requires immense flexibility, so life is rarely plannable for us anymore.

If there is a supplement or medication or protocol out there, I have likely tried it and/or am doing it… Brandon keeps reminding me that if beating this were easy, they would have figured it out by now. I’ve been trying to get beyond cancer for 5 fricken years. I am beyond exhausted and hanging on by a thread of hope most of the time. But I know that that thread, however thin, will keep me working so that I can stay here with my husband and kids for as long as I possibly can.

Proton Radiation #2 Complete

You think this Election Day is stressful? Try adding in radiation treatment and More scans on top of it all 😭 Stressed to the max today and doing my best to relax in whatever possible ways I can.. including a high dose of Valium 🥴 Treatment #2 is done, and now I’m waiting for end-of-day CT of chest, abdomen, and pelvis. Planning to meet with the rad onc again on Thursday to discuss the scan results.

Please send up those prayers and good vibes for great scan results and peace while I wait for them. The collective anxiety of our country can be felt today, and I hope everyone is doing their best to take care of themselves and each other ❤️

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 ❤️‍🩹

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! 🙏🌻

1st Week of Radiation Complete, with Trip to Emergency Department

Radiation 5/8 completed, and I ended up in the emergency department shortly thereafter 😫

I was feeling more fatigued heading into treatment this morning, but I knew that could be expected. I spoke with a nurse and the radiation oncologist after treatment because I was feeling more short of breath. It quickly escalated, and while my oxygen saturation remained perfect, my heart rate and respirations were increasing and I started to become dizzy. Once they had me lie down, my left arm went numb, then my right, then both of my feet. I felt buzzing, tingling, and shaking everywhere in my body, but I couldn’t lift or move my arms or hands.

They called a code, ran a bunch of tests, and sent me via ambulance to the ED. A CT angio and echo were essentially normal. The EKG showed some abnormalities, and given my history of chemo-induced cardiomyopathy and heart palpitations, I’m now stuck wearing a holter monitor for the next month.

I was thankfully able to come home tonight, but I am beyond exhausted. I’m so tired of being so scared all the time. I’m in so much pain from the week as it is, now I had to miss my chiropractic appointment, and my body’s been put through the wringer today… when it’s already trying to heal from radiation 😭

We’ll have to see how the weekend goes, but they’re still planning to continue treatment next week, while monitoring me closely. I will do my best to rest up this weekend, but there’s always so much to catch up on after getting home, and of course, I want to spend quality time with the kids.

I’m grasping desperately for hope, trying to find faith through the fear, but this monsoon of Shit can go away already!!!! I’m finding it very difficult to move through the anger and grief from all we’ve been dealt these last few years. Enough is enough!!!

I am ready for my miracle 🙏

Scan Updates

I Really thought I would be sharing different news today, but unfortunately, I’m facing radiation again 😩

The lung nodule we had planned to treat in January (which I ended up canceling because it had actually remained stable since the previous scans) has continued to grow again. Because of its proximity to my heart and major blood vessels, the bigger it gets, the riskier treatment gets. I therefore need to do radiation. Soonest I can meet with the radiation oncologist is Monday, and then we move forward with a plan.

The anger, grief, and despair I am feeling are all-consuming. Every hit with this cancer shit feels like a diagnosis all over again. I SO thought this was my turning point. That things were moving in a better direction, and I could take some time to distance myself from the intensity of it all. To feel a little normal again. To continue to heal, instead of adding more insult to injury. I have worked SO hard to heal! To learn everything I possibly can, get as many tools under my belt as possible, experiment, and address every corner of health I can in order to get better… but here I sit. Needing radiation again.

I don’t know how to move forward yet. My days are already consumed with trying to take care of myself. I don’t know how much more I can do. It’s already not sustainable. I don’t know where the balance is. I don’t know how to maintain hope in times like this. I feel like I’m barely living; all it seems like I do is try to keep from dying.

I’m so tired of only being able to live and plan in these small chunks of time, and even then, stuff can still completely go to shit. And yes, I know Everyone’s plans can go out the window, but I legitimately cannot safely plan anything anymore, and have to fear for my life on top of it all.

The positive news is that nothing new showed up on the scans, and the remaining lung nodules have essentially remained stable. I am aware of these good pieces of information, but right now, it’s really hard to get and maintain a grip on everything.

I’m feeling foolish and heart broken… maybe I’m crazy for expecting miracles. But I refuse to accept that this could take me down.