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.

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

Surgery Tomorrow, 7/3

I know it’s been a very long time since I’ve had the capacity to provide an update, but I would greatly appreciate your kind prayers. I will be having surgery tomorrow to remove a couple scalp masses, one of which has gotten very large and has been causing excruciating pain (along with many other difficult symptoms) for over 2 months.

I have been struggling immensely with pain in various tumor sites for months now. I have been hitting the integrative therapies incredibly hard, and I believe the pain is, ironically, a good sign, but it is extremely difficult to manage.

I don’t know how long I’ll be in the hospital post-surgery, but given my current condition and typical responses to anesthesia, I doubt I will be able to provide any updates in a timely fashion. I very much appreciate your prayers, well wishes, positive energy, and support as I head into another frightening procedure.

Much love 🩷💜

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 ❤️