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.

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 🩷💜

Made it Through Surgery!

Made it through surgery and am back home! Dealing with quite a bit of pain, soreness, and grogginess still. Overall, feeling relieved that it’s over, the mass is gone, and that I am still able to use my left arm and hand (tho currently limited from the pain and bandages). I’m not even 100% sure where the incision is, exactly, as the huge bandage is covering it all up. Have to keep this on for 5 days, then replace for another 5 days. The mass was in the axilla, kind of against the chest well and scapular muscles. It was pressing on the brachial nerve plexus, so I’m very hopeful that these awful nerve symptoms will improve as I heal 🙏🤞

The surgeon wasn’t able to locate the small scapular spot that showed up on the most recent MRI, so we’ll just have to watch that area and pray it is nothing and goes away on its own 🙏

Also still dealing with pain and discomfort from the ovarian cyst, but have had some moments of improvement amongst the pain, so also praying that resolves on its own! Still trying to get follow-up coordinated for that.

I really appreciate all your prayers, well wishes, and check-ins. Hoping I sleep well tonight! Last night only afforded me about 3.5 hours of sleep 🥴

Love to you all!! 🩷

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

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

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

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

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

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

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

I am ready for my miracle 🙏

Home from the Hospital!

I made it home!! I was discharged from the hospital Saturday morning, and got to go home for the first time in 16 days! I am very happy to be out and back with Brandon and the kids again! Now I need to be careful not to overdo it with all the unpacking & laundry, in addition to the things I want to do 😏 I can say my own bed has never felt so good!!

Outpatient therapy will start this week, and I have lots of exercises and stretches to work on in the meantime to progress in my recovery. I’m still waiting to hear back from Mayo about their final recommendations on next steps. Trying not to think too much about it all, because it instantly puts a weight in my stomach and a dark cloud over my day.

As excited as I’ve been to get out of the hospital, it was very hard to say goodbye to my rehab team on Friday. My doctor was truly one of the best I’ve ever met: both professionally and personally. My lead OT and PT were pure gems. I cried saying goodbye to all of them.

I will continue to update through my recovery, but wanted to take a moment to let everyone know that I’m safely back home, and so very grateful to be here! 💜❤️