Radiation & Health Updates

They say a picture is worth a thousand words. This photo describes what my life has been like lately. I am not tolerating radiation; in fact, I had to cancel treatment this past week and have no idea if I can even continue – I’m not even halfway done. The only other option anyone has to offer me from here on out is chemo. The odds of it working are incredibly low, but the odds of it further harming (or killing) me are very high.

I have never felt so awful in my entire life. I fall asleep at the drop of a hat during the day and don’t wake up feeling any better. I spend 10+ hours in bed (waking frequently) and awake in the morning feeling worse than I did when I went to sleep. I have this horrendous cough that strains every muscle in my body, and often leaves me retching uncontrollably over the garbage bin. Nearly every time I try to talk, it causes a coughing fit that leaves me reeling and crying. I’m taking pain meds around the clock and am still in excruciating pain half the time. Getting in with palliative care or a pain management provider for the last few months has been yet another ridiculous headache that showcases our broken healthcare system.

I can do very little for myself anymore, and have such little energy or capacity that eating and cleaning myself are about all I have left in me. Even if I have an appetite, I can’t eat much, or I end up more nauseated or in a ton of pain. I grow out of clothes each week, despite losing muscle and fat… I’m retaining a ton of water which just adds to the discomfort and general feelings of illness.

I want to be healthy. Why is that so much to ask?!?!?! I want to decorate for Christmas, make Christmas crafts with the kids, bake, go shopping and not need to use a motorized scooter to get around. I want to be able to do hobbies I enjoy. Even to stay awake to be able to read a book. I’m not asking anyone to do these things for me. I want to be able to do them myself!!! It isn’t a big ask! …yet each day I feel weaker and lower on hope. I pray every single day for a miraculous healing. I’m alive, but this isn’t living. This is suffering and trying desperately to find any ounce of good or joy or pleasure.

I truly do not know what will come next. I don’t know if I will do treatment this coming week, if I’ll ask for a longer pause, or if the radiation oncologist will put his foot down and tell me we can no longer proceed. He’s already suggested I may want to stop and pivot to chemo instead.

My body and I have battled this storm for over 6 years now, and I’ve never been this lost, exhausted, or defeated. I know it must be easy to think or say, “Keep going, you’re so strong, you can’t give up…” but you’ve never been in these shoes. Imagine the sickest you’ve ever been. Now imagine being that sick for Months with no end in sight. And every day you feel worse and weaker. You want SO badly to get better, to feel something other than horrible, to LIVE.

I don’t want to give up. I don’t want to die. But this.. this isn’t “living”… this is trying every day to not die, to feel the worst physical and emotional pain day in and day out. And most people either see me as a lost cause and can’t hold hope with me, or invalidate my experiences when they say I’m not allowed to feel or say certain things because of the discomfort it causes them. Every provider feels the need to remind me how sick I am and everything that’s wrong with me. Everyone has opinions, but no one has the answer.

I’m doing my best to find any possible comfort amongst the incredible pain. I appreciate those who have reached out, and I apologize if I don’t respond or take days (or weeks) to do so. Please know I’m doing my best, but I just can’t keep up with anything anymore. If you want to help, please lift me and my family up in prayer. Pray for miraculous healing. For strength. For guidance. For peace.

I want to Heal. I want to Live. I need a miracle.

2 Weeks Post-Op

It’s been 2 weeks since my big surgery. The 7 day hospital stay was extremely rough, and recovery at home has been no picnic. I am slowly beginning to feel more human again, and am starting to be able to eat larger portions of food. Pain management has been a struggle, but is no surprise.

In total, I had 4 larger tumors removed: 1 from my vulva, 1 from the back of my right shoulder, 1 from my right gluteal muscle near the hip, and another very large (approx 16cm) one from the left lobe of my liver. In order to remove the large liver mass, I lost the remaining segment of my left liver, which contained around 40 nodules in total.

I woke up with an NG tube, the epidural they placed pre-op, a foley, a wound drain from my glute, countless bruises and punctures, 2 IVs in addition to my 2 picc lines, and 4 new, large incisions… not to mention all the extra cords for continuous cardio-respiratory monitoring. On post-op day #5, I had to have another wound drain placed in my abdomen due to fluid collection around the liver surgical site. This huge pain in my A stayed in place for 5 days until I was finally able to remove it.

As I stated prior to surgery, the plan here was “palliative,” so there was a good amount of stuff left behind, which I have continued to struggle to process, not aided by the pain those spots are causing. All of the pathology reports mentioned “Therapy-associated changes are present in the background” in the resected tumors. This means that the integrative treatments I’ve been doing did Something, but unfortunately, not enough (yet).

I honestly don’t know what else to say right now, as I’m simply trying to make it through the days with the pain and physical limitations, and spend quality time with Brandon and the kids. I am very tired and struggle to get or stay comfortable. So I do my best to support my body through recovery, unsure what my next steps will be. It’s incredibly difficult to maintain a positive attitude and strong spirit when the “experts” see and treat you like a ticking time bomb. But they are not me. They are not God. I am doing my very best to block out the negative noise and focus on my determination to live and heal. This isn’t to say there haven’t been a LOT of tears as I work through the grief and many other emotions.

Thank you for all of the prayers, well wishes, cards, gifts, and care. Once again, I’m sorry I can’t respond to every outreach. I/we appreciate you all ❤️‍🩹

Before: Front abdomen, with left liver mass pulling everything to the left

Before: Abdomen from side, looking pregnant 😔. The left liver mass was pushing my ribs far out, separating them, and separating my sternum. The nerve pain was terrible and it was putting excruciating strain on my back. It was also squishing my stomach like a pancake, so I hadn’t been able to eat much in months.

Morning after surgery, NG tube in place and barely able to move

The abdominal drain they sent me home with

Goodbye, abdominal drain! 👋 This thing was such a pain to get and have, and it didn’t want to go peacefully 😣

After: These abdominal incisions get bigger every time 😔

After: Glute spot (not pictured: drain puncture site)

Another Major Surgery Coming Up

I’ll be having Major surgery this coming Monday to deal with a number of tumors that have been causing severe, long-standing problems. I’m still healing from the scalp surgery and skin graft, but am in dire need of more surgery… Three different surgeons will be operating on me, in 4 different areas, but I will still be closed up with numerous masses remaining that they unfortunately won’t remove.

I have an extremely large mass on the left lobe of my liver that has been restricting my ability to eat for months, as it’s pressing directly against my stomach. My ribs are flaring and separating, muscles and nerves stretching and pulling apart, spine/ribs/back/muscles being strained, and I cannot get or stay comfortable in really any position.

An orthopedic surgeon is planning to remove a large and bothersome mass from my glute, and another from the back of my shoulder. A gyn-onc will be removing a very sensitive mass on my vulva.

There are numerous other masses in the abdomen and pelvis that the hepatobiliary surgeon does not feel are appropriate to remove right now due to increased risk of complications. Despite the fact they are all causing pain and symptoms, and they will be cutting my entire abdomen open, this surgery is viewed as simply palliative by modern medicine.

We are struggling immensely with the weight, stress, grief, anxiety, frustration, helplessness, and anger of all of this. I have been working SO UNBELIEVABLY HARD for SO LONG to heal. From February to June I was doing daily IV infusions between home and my integrative physician’s clinic. Doing so many therapies it would make your heads spin.. many of them helping me feel better and giving us hope that we were finally moving in the right direction. But somehow it all became too much and rather than helping me heal and feel better, tumor site pain suddenly picked up significantly, and the more I did, the more the pain and tumor swelling progressed. So I unfortunately had to pull back on almost everything in June, and have the scalp masses removed because I could barely sleep from severe pain anymore. I still haven’t been able to resume most of the therapies due to worsening of already severe tumor site pain each time I try again.

So now I’m in this place where the surgery will alleviate some suffering, but possibly not enough that will allow me to resume any of the treatments that were previously helping me.

No one in conventional medicine sees an answer for me. I’m struggling to get requested consults or considerations for newer or less invasive/less toxic treatments that could help me, but they’ll happily offer me chemo that has terrible odds of working and fantastic odds of killing me. The conventional oncology system is broken in our country. They seem to have zero interest in trying to uncover the true root causes, and instead spend billions trying to find new ways to treat the symptoms (tumors) rather than solving the underlying causes and how to reverse them while healing the patient as a whole. I shouldn’t have to spend nearly every waking hour of my life doing my own research, paying thousands upon thousands of dollars out of pocket for every integrative consult and therapy, and experimenting on myself to try to survive. I am not blaming any one institution here; it is Everywhere in our country (and many other countries as well). This isn’t to say I’m ungrateful for the treatments I have needed, but if true root causes were researched the way pharmaceuticals are, recurrences and stage IV terminal diagnoses would be nothing like what they are today.

It seems to me now that many people see me as a lost cause. As a story character whose fate was sealed with the original diagnosis. But I don’t, nor have I ever, seen myself that way. What I do see and hear and feel (deeply) is the fear and preconceived notions that people (typically providers) have about me. I am extremely sensitive to people talking to me and making treatment decisions as if my ending has already been written. I have plenty enough fear and grief already. I know the odds are stacked against me. But that doesn’t mean I don’t still believe in myself or in miracles.

We are struggling immensely with all of this. Despite all we’ve been through, it unfortunately just seems to continue to get harder. I have extremely limited physical capacity right now, mental capacity is beyond its maximum between the severe pain and stress, and I need to do an insane amount of preparation for surgery and my hospital stay. My body wants to rest but cannot find a way to get comfortable to do so, and my heart just wants to be with Brandon and the kids, but my mind pulls me in a million directions while the pain and debilitating fatigue are screaming at me no matter what I do. Brandon continues to work full-time and try to carry me, the kids, the house, and everything else.

We appreciate your kind words, prayers, and support, but please understand we are drowning and oftentimes trying to respond to even a quick message is just too much for us right now. Please understand it is Not personal, and your kindness is noted, taken to heart, and very much appreciated.

As always, I will do my best to share a post-op update when I am able.

Thank you ❤️‍🩹

Post-Op Day 1

I made it through the surgery and was back home by late afternoon yesterday 💜

The surgeon removed 2 scalp masses, 1 of which felt like a bowling ball attached to my head. Because of its size, they had to take a skin graft from my thigh and place it over the scalp.. I will have a bald spot there once it fully heals. As I was told ahead of time, the donor site on my leg is definitely the toughest to deal with right now: lots of intense burning, like really bad road rash, and continued drainage that I have to manage. I’ve been used to excruciating pain from the large scalp mass for the last few months, so even though I have a massive sponge/bolster stitched into my scalp now, it still hurts less than it did 🫣 Hoping it stays that way!

I’ll go back next week to have the bandages changed and wounds checked. I’m doing my best to manage the pain and discomforts, as well as the wound care tasks.. my nursing background sure has come in handy with a lot of this stuff. Brandon has been thrust into his own training as a nurse for me the last several months, and I’m so very grateful to have him to help get me through all of this!.. even when it makes him nervous. Walking has been tough due to after effects of anesthesia and pain meds, and the pain of the donor site. Bleeding picks up quite a bit with activity, so I’m doing my best to rest.

I’m happy to be home with Brandon and the kids again. This 4th of July looked a lot different for us, but I’m grateful to be home together, nonetheless.

Hope everyone has a safe and fun weekend. Thank you for all of the continued prayers and messages of love and support ❤️💙🤍

**There are a couple photos of my battle wounds, but I turned them B&W to reduce the graphic nature

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. 🙏❤️

7 down, 1 to go!

Radiation #7 complete: Only 1 more to go! Feeling a refreshing touch of hope after my consult with interventional radiology yesterday. They have 1, possibly 2, better options for helping treat the liver mets. I’m waiting to hear back from them about the 2nd, but either way, it is looking like I won’t be facing another major abdominal surgery or more radiation with the potential for detrimental side effects due to their size! While (like anything) either of these treatment options would come with their own risks, they seem like something I could actually handle right now 🙏

Please keep those prayers coming! I know they’re being heard and are helping! 🙏❤️

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 ❤️