1 Week in the Hospital

I’ve been in the hospital for over a week now, and am still unsure when I’ll be able to go home.

I was treated with IV antibiotics for bacterial pneumonia. The cough, mucus, and shortness of breath have been steadily improving. Hospital protocol still has me on isolation, even though I came down with Covid symptoms 3 weeks ago… this means I can’t go for walks around the unit for a change of scenery or exercise, and everything is extra complicated for the staff in order to gown, mask, and goggle up just to come in my room.

I came in to the ED with a hemoglobin of 5.4, and have since received 4 blood transfusions… my hemoglobin yesterday morning was only 7.6, however 🤯 While some fluctuation is normal, the continued slow but steady dropping of the Hgb is concerning for a bleed somewhere. The level drops, I get a unit of blood, and a day or 2 later, the level drops again and I need another transfusion 😞 I had to have an upper endoscopy yesterday to check for any sources of bleeding. Thankfully, no bleeding source was found, but we still don’t have answers. Just continued watching and potentially more invasive procedures to locate a cause.

I’m also still requiring supplemental oxygen 24/7. We’ve been working to wean me down, but I’m still needing at least 2-2.5L/min. We’re hoping the steroids will bring down some of the lung inflammation and make breathing easier, but side effects and consequences of steroids aren’t negligible, especially in an individual as sensitive as I am 😵‍💫

I’m also dealing with a lot of edema and ascites again, so am on IV diuretics that keep me running to the toilet at least once every hour all day long… this is really tricky to balance with tachycardia, cardiomyopathy, and POTS. I’m having a severe pain flare-up from the lack of normal activity, and all the time on uncomfortable gurneys and hospital beds. The last couple nights I’ve literally barely been able to sleep despite every pain med they’ll offer me and every single self-management tool I have access to. Combined with narcotics, I’m usually too groggy to read, text, or do anything.

Needless to say, I miss home and I’m sick of being miserable! Thankfully, the hospital isn’t too far from home, so I’ve been able to see the kids a few times, and Brandon is nearby to help while taking care of literally everything else and working.

Hospital food and takeout are getting mighty old. I miss my bed and all the comforts of home. I miss the only noises and interruptions being the sweet sounds (or sometimes not so sweet 😏) of the kids.

Please pray for continued healing, strength, and peace so that I might get back home with my family soon. I also apologize for all the unanswered messages this past week. Most of the time I’m just trying to make it through each moment 🫶

Lots of Updates; In the ED Currently ❤️‍🩹

I know people have been anxious for an update, and I hope you’ll understand why it’s taken me so long to post one.

Radiation to the large liver mass was, put simply, too much for my body. I ended up making it 3/8 of the way through the planned treatment before my radiation oncologist and I decided to call it quits. I was so unbelievably sick and in so much pain 24/7, I could literally barely function. Since the only other options I am being offered from Mayo and the U of M are systemic therapies, he felt that if I could only tolerate one thing, I should try to pivot to that.

I made the very difficult decision at the end of November to quit radiation and take steps to begin systemic therapy. After weighing all of the (honestly, terrible) options, I have opted to try an oral targeted therapy called pazopanib. It isn’t a chemo, but carries many of the same awful risks. The biggest difference is that it is something I’d take on my own every day, and can therefore stop on my own, if needed/desired at any point. Would you believe I’m still waiting on the medication a month later?! Gotta love the world of prior authorizations, specialty pharmacies, and red tape 🙄

During the waiting period I’ve tried my best to recover from the chaos caused by radiation and continued tumor growth elsewhere. I FINALLY after may months found a pain doctor willing to work with me (thanks to connections through my amazing chiropractor… again, the lovely world of medicine). We’re in the process now of trying to figure out what I can tolerate and what works for me.

Then, a few days prior to Christmas, our house got hit with COVID. We managed to avoid it for nearly 6 years, but it reared its ugly head and ruined our Christmases. I was honestly so sick I barely remember watching the kids open their stockings and gifts at home. I can also say that was the sickest and worst I’ve ever felt in my life: even more than when I nearly died from chemo several years ago.

Thankfully, Brandon and the kids recovered well and quickly, but it’s been a different story for me. As I’m typing this, I’m in the emergency room. I’ve been watching my oxygen levels very closely at home the last couple weeks, and it’s been insanely difficult for me to do anything other than sit on the couch. Eating, talking, bathing, dressing, walking to the bathroom.. have all left me short of breath, coughing, heart pounding, and feeling like I could pass out. I was doing supplemental oxygen at home, but as of this morning, it was no longer enough.

Here at the ED I found out I am severely anemic (hemoglobin of 5.6 🤯🤯🤯), and it looks like I have the start of a bacterial pneumonia in my left upper lung. There are a few other things that need to be watched, but for now, we’re addressing the anemia and pneumonia.

So now I’m getting oxygen, IV antibiotics, fluids, as well as blood transfusions, while I find out which hospital has room to admit me 😖 The joys of a terrible cold/flu season. It sounds like it’s too soon to tell, but I may be stuck in the hospital for a few days, all depending on how well I’m tolerating things and improving.

Especially now, we really really appreciate your prayers and positive thoughts sent our way. Still praying for a massive miracle, and the first step is getting well enough to get home soon! I absolutely despise being in the hospital and being away from the kids. I’m already looking forward to my own bed, being free from all these cords, and sitting on a comfortable couch surrounded by my family.

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.

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.

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! 🙏❤️

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 💜