Starting Radiation Again Soon

Sadly, you’re not looking at a baby belly… this is a tumor-filled belly 😩 The last couple of months have been incredibly challenging. Just as I was starting to feel a little stronger a few weeks after surgery in August, other symptoms began to show up or worsen, and have only gotten more difficult to cope with since then.

I had scans in early October which showed continued progression. I haven’t been able to do much for integrative treatments in several months now because my body screams a hard NO!! whenever I try. I do push, because I want this stuff to work, I want to heal, but there has been no clear payoff with anything lately.

I have literally begged and pleaded with surgeons and other doctors to help me: specifically with a very large liver mass. Every single consult and plea has been met with a closed door, and sadly, little to no compassion. I had begged the surgeon in August to do everything he possibly could while he had me opened up, but he said he would only take the largest mass, and then we would discuss further interventions after I’d had some time to recover. However, when that time came, I received a hard No to any further care from him. I’ve consulted with multiple specialities and surgeons across different health care systems. None will help me. They see me as too high risk and a lost cause without much time left.

The only conventional provider I can find who is willing to try anything on the large liver mass is my radiation oncologist. I am set to start proton beam radiation this coming week, and the treatment course is expected to take about a month. I have no idea what to expect, but because of the large size and location, as well as involvement of the inferior vena cava, the rad onc is worried about how sick I could get. Idk how much I’ll be able to eat, keep down, detox, or digest… I already have terrible abdominal pain and pressure, and because of the restricted blood flow in the IVC, I get extremely short of breath, weak, with heavy, painful, shaky legs any time I bend at the waist or take even 2 stairs. Lymph and blood flow are restricted below the liver, so I have a lot of fluid retention, lymphedema, and more nerve pain now. Many mornings are spent on the couch writhing in pain for hours as I try to deal with the severe radiating pain down my leg, in my low back, and through my whole abdomen. Sadly, nothing really works to alleviate the pain.

What’s probably one of the hardest things to deal with is knowing I have a bunch of integrative tools at my disposal, but my body simply won’t tolerate them anymore. When I push, I’m met with horrible reactions that last days and only result in further tumor swelling/growth.

Needless to say, I have been very lost and simply incapable of doing much more than trying my damnedest to survive each day. Life barely feels real anymore.

I have SO many negative emotions toward certain providers and their lies, misinformation, inflammatory statements, and omission of extremely critical information over the last 6 years. I am working to process all of this, because I know it isn’t doing me any good. As both a patient and provider though, it makes me completely disgusted with the way conventional oncology is run in our country. There have been some angels in this hell, but unfortunately it isn’t the norm.

Six years in, and there are very few stones I’ve left unturned. Yet here I am, fighting for my life harder than I ever have, with seemingly few options remaining. I still believe, somehow, someway, there IS a path to true healing for me. I don’t know what it is. My senses don’t perceive it. But my heart and soul believe.

I don’t know what the next month will bring with treatment, or if I’ll have the capacity to keep everyone updated. Honestly, right now, I can Barely take care of my Very basic needs each day. Thank you in advance for your understanding, prayers, and support.

Hanging in There, Focusing on Healing

Thank you to everyone who has checked in, sent cards, gifts, or food, and for your prayers and love. I’ve been approaching survival a little differently these past couple months, reprioritizing things other than social media (in today’s world, can you blame me?), and continuing to dive even deeper into solving my own healing.

I had scans in early January. A few things measured larger, there were a couple areas of unknown, and a few tiny previous unknowns were no longer there 🙏.

I had a consult with the surgeon who did my 2nd abdominal surgery (in 2021). He said he could do surgery for the liver, but wasn’t exactly sure it would be “worth it.” It would be another major surgery (which brings its own concerns and risks, including more scar tissue and knocking me down further), and the recovery process could potentially spur other areas to grow more. They continue to offer me chemo, but I’m still not in a place where I feel that it is the right choice for me.

Since that is all Mayo has to offer me, I have continued to dedicate every single day to my quest for healing. I’m researching and doing things I never previously imagined. I’m fully experimenting and it is scary every step of the way, but it still feels safer and wiser than the alternatives to me right now. I have a really wonderful team of providers and staff walking alongside me, making this extremely unique journey feel a little less lonely. This “team” is of my own making: multidisciplinary, from all corners of the metro, even across the country, and none of it is covered by insurance.

I continue to learn things that I’ll never be able to unlearn, which are shaping and even drastically changing my worldview. While I am trying to let go of the resentment that conventional cancer care exists as it does today, I am motivated to find a better way for myself.

Brandon continues to be the amazing, God-given hand for me to hold through all of this. He helps me research, helps me find hope when I’m down to my last shred, supports me in a million practical and emotional ways… he is absolutely the best person to walk with (or sometimes carry) me through this journey.

My presence will likely continue to be intermittent moving forward. I already have 1-3 appointments most days, and there’s a chance this will be increasing in the relative future. Amongst all the additional chaos of adulting and parenting, I am trying to find ways to be present with the kids and Brandon while not spending Too much time researching (which is incredibly tough, because it never feels like I can learn enough). We joke that I’ve learned more than enough these past few years to earn myself another doctorate, and there’s no doubt it has completely changed me.

I want to truly thank you all for the continued love and support, even if I’m not able to respond in a timely fashion, or at all. I am always doing my best, and still looking forward to the day I can post the amazing news for which I’ve been working and praying so hard every single day.

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 ❤️

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. 🙏❤️

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 ❤️‍🩹

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!!!