You know, I thought 2023 was bad enough, with my mother dying and four months later with my father dying, but 2024 and going into 2025, this is a new kind of fucked up hellscape.
For the last few weeks, I’ve had a lot of pain in my stomach (the organ, I do have gastritis) and on my right side by my liver, when I would lay on either of those sides for longer than 30 minutes. I thought the pain was due to me eating anything besides plain rice and chicken and that I needed to give my PPI medication more time. Then I thought, incorrectly, what if it’s a clogged bile duct (on the right side) and got in my head about it.
Thursday – Late Night
My oldest son randomly looked at me and said, “I think you have a fever.” I took my temp and it was 100.2. Nothing to worry about as I have had constant low-grade fevers since 2014 that no one could figure out. A few hours later I took it again and it was 101.3. I got a little worried, waited another 30 minutes, took it again and now 101.7.
I thought I had a clogged bile duct.
Here’s the thing, I rarely will go to the ER. It takes the absolute worst most debilitating migraine that’s 5+ days long for me even to consider going.
Yet… I felt this strong urge that I had to go to the ER.
My teenage son woke my spouse up at 7am Friday morning to tell him that I wanted to go to the ER. I didn’t put on “real” clothes, no bra, just my nightgown and stretchy pants and a hoodie, which is completely unlike me.
I had this other weird urge to change out my earrings to these super basic generic plastic earrings. Why? No idea.
Still, I firmly believed it was clogged bile ducts, why that? Hell if I know.
Friday – Day One
We live about a mile and a half from Luthern General Hospital, yet I felt again (how many times can I say it!) this strong urge to go a bit farther to Northwest Community Hospital, which is where I had my son years ago. The ER wait time was only 30 minutes so I thought that alone was worth going.
We got there at 8:30am and I still had my fever when I was triaged and they got me back into the ER but in the hallway (where I remained for 8 hours).
The doctor at first tried to say I had a UTI and I think I sort of irritated him when I said very firmly, “I had a UTI every month in 1999. This is absolutely not a UTI. I would bet my life on it.” He then ordered an abdominal CT scan with contrast. Which in itself was another random moment because quite literally everyone else over the last 10 years when I have complained of pain, do only chest CT scans.
While we waited to get the scan, I had two nurses come over to start an IV. Suffice it to say, the one nurse fucked my good hand (remember, I get labs done every 6-8 weeks for the last five years) and I’m still healing from it. She managed to luck out and get one in my inner elbow though.
The results of the CT came in at 12:09 PM. The notification came through on my phone and I opened the results where the first line reads, complex up to 33 cm abdominopelvic mass with satellite lesions.
I sent the full results screenshot to my twin sister, who is an ER RN. I called her to tell her to look at her messages and the first words out of her mouth were a very calm, “So, you’re going to be admitted to the hospital”. I started crying because I got overwhelmed instantly, and she explained what would happen in the very short term of being admitted.
The ER doctor came back around and told me that they found a mass and I would be admitted but that my room was being cleaned and it would be awhile. Around 4:30pm I was put in my hospital room, I was relieved that it was a private room and I was told it was a newer room in a newer area of the hospital.
Just past 7pm when shift changed happened and I met my night nurse, I was told that I was to immediately begin colonoscopy prep.
OMFG. WTAF. I had to drink a GALLON of GoLYTELY and it was horrific. I’m already weird enough about beverages and I’m always dehydrated on top of it so this? A NIGHTMARE. Then it turned out I am a “slow responder” so it took forever before it even took affect. Thankfully, in a weird way, due to my barely eating anything lately, it didn’t take too long to get to “goal”.

Now, I had at this point, not had a sip of water or saline bag or anything since 8:30am Friday morning. Due to that I developed one of the worst migraines. All I was offered during the 3-day-hellscape-migraine-of-doom was Tylenol. Tell me you’ve never had a migraine without telling me you’ve never had a migraine.
Saturday – Day Two
Time to get the colonoscopy. This was done around 8:30 am. The anesthesiologist and I bonded over the fact that we are both twins and he said as I was being knocked out that he would give me something to help with the migraine. Awesome. Love you new bestie.
When I woke up which was pretty instantly after they took me off the meds to keep me under, my first words were, “Hey, the migraine isn’t so bad anymore! It’s not gone but it’s functional now!”. Because… priorities.
The doctor told me that I have a “beautiful colon”. Sir… are you flirting with me? I’ll take it!
I was brought up to my room, feeling a bit groggy from the med I was given for the migraine, that lasted maybe… a half hour or so. During this time, as I was on the sixth floor, felt I was in the sky due to the clouds.

Then just a couple hours later, around 1:45 pm I had a chest CT with contrast.
During all of this, I have specialist doctor after specialist doctor after specialist doctor coming into my room. It was such a blur.
Finally put on saline bags. Migraine is back to full force. Still offered Tylenol.
My spouse was with me at from late afternoon – 11pm on average but generally didn’t interact with me much.
Sunday – Day Three
Still no rest, at this point I hadn’t urinated in over 24 hours. Migraine is just shrill agony and I asked the night nurse repeatedly for anything. I was given a Benadryl pill, which did absolutely nothing. The night tech is continuously bringing me ice packs to try to cope with it.
This day I get an internal ultrasound, which I got a little amusement out of as I just had one from my gyno in November. I also strongly believed that after five months of no period, I was ovulating. Sure enough. Because of course my body thinks now is a great time to be fertile.
I had a surgeon come in and ask me if I could handle bad news, explained that this is bad, very bad, and showed me the CT images where it shows the mass displacing all of my organs. The “good news” is that it’s not attached to any of my organs. Ok. Cool. Logically I’m processing, emotionally, nope.
Still getting the 3 – 8 am multiple random blood draws.
This time my spouse brought my teenage son with him. Which caused me to hysterically cry for hours. It felt more real. We watch Top Gun.
Monday – Day Four
This day was the CT-guided biopsy. They didn’t know until about two hours before the procedure, when I would be having it because it’s such a hectic time due to the holidays.
So due to me being there already awhile, and so many different nurses checking my IV site, it kept slowly being pulled out. It got to the point where saline was pouring out so just then, transport arrives to take me to the biopsy. Of course. They NEED a strong IV site for the contrast needed. So here comes rushing the IV ultrasound duo to get one placed in my forearm. Delightful.

It was so different than what I expected. I’ve had uterine and cervical biopsies done in the past so I thought for a belly one, it would be like how it is on TV where it’s this thin crazy long needle situation, nope! It’s this… shunt? And then there were 6 of these really thick… clicker style situations?
When I was moved to the hallway to wait for transport, one of the people involved came out of the room to tell me how weirdly awake and alert I was. He repeated a few times how he hadn’t seen anything like it. I joked and said how I was told after my endoscopy in October and the colonoscopy. I’m just hard to keep down!
Of course, it’s most likely due to my severe ADHD and the red-headed gene. Still. I AM AWAKE SIR.
Tuesday – Day Five
Ahh the two-hour MRI with contrast. Oh was this an experience. The doctor gave me a 0.5mg Ativan pill. I laughed and laughed. I explained that I was up to 4mg at one point with zero effect but thanks for the sugar pill. So when I got down to the MRI, I asked the lovely handsome men if I could at least have music. Yes, they said, Pandora or Spotify (with ads, pure misery, LOL). They asked what I wanted to listen to and without hesitation I said, “Linkin Park – Meteora”. Ohh that impressed them, we had some Linkin Park discussion about the new lead singer. So there I am, in the tube of doom, hot as hell, back screaming, surviving with my jams, then the album ended and Green Day started playing. Nope. So I yell out, “Linkin Park – Hybrid Theory!!” ok cool back to jam survival mode. I was planning on the first Evanescence album if I needed a third but thankfully the two full Linkin Park albums got me through it.
Wednesday – Day Six
The oncologist came into my room, and for the first time, sat on my bed. He told me that I have Liposarcoma. It is a rare cancer that typically is in the arms or legs. A more rare presentation, which is what I have, is a very large mass in the belly/abdomen towards the back. It’s a cancer that is typically found in males ages 50-65. So basically, I am rare AF. Liposarcoma in general affects 1 in 100,000 people in the U.S. each year. He suspects I am at stage 3. I am to have a PET scan on my oldest son’s birthday which is January 9th, to confirm pathology and stage.
I message my adult son’s father on Facebook. We hadn’t spoken in over a year and before that it had been ten years. I asked for a call and shocking me immensely he did a Facebook call (not video). We spoke for over an hour and it was… normal. Effortless. He was kind. He was who I remembered. It was intensely healing for me for a bunch of reasons.
I texted my niece’s father as we had been close friends for decades, worked together, and he had seen me through all sorts of medical situations. He read it, never responded. I dunno. My niece is fully aware of what’s going on and texted me, but I thought he should be aware in case she was upset as she was with him at the time this was all happening.
I finally leave in the late evening. I took one last photo of my room.

Thursday – At Home
Immediately the phone calls started. Doctor office after office calling to set up appointments for me. One of the calls for the scheduling of the PET scan informed me that oh look, you have NO HEALTH INSURANCE!!!
Cue my fucking panic.
Longgggg story short. When I asked my spouse repeatedly in November and December, if the insurance was changing in any shape, and he told me it was staying “exactly the same”. He meant oh we are completely changing providers and I won’t tell you and you have to figure it out.
Yeah. Oh and when we woke him up from his sleep to see wtf was happening, he complained that even though he slept 8 hours, he didn’t sleep “well”.
He’s already used me to get sympathy from his work friends, upper management, got out of a ticket, etc. Cool.
So I figured it out, went from UHC to Cigna. Hope that move is a positive one because I am not familiar with Cigna.
Friday – At Home
The spouse has ignored me for 24 hours at this point.
10:30pm I start to vomit.
The fucking norovirus hit.
It got me and my teenage son.
DEMOLISHED US.
My adult son fully took care of us and my brother-in-law dropped off electrolyte packets, meds, and tylenol. I had a 102.9 fever the whole time with a heart rate that would not dip under 120BPM. I kept calling it, the Colonoscopy’s Revenge and Colonoscopy the Reckoning.
My spouse stayed in his bedroom. There’s way more about what happened but I don’t have the emotional energy to get into it.
Saturday – At Home
Still norovirus. We’re just trying to survive.
Sunday – At Home
Finally seeing the light at the end of the tunnel of fluids.
Braved for the first time in… decades… packaged ramen. It stays down. Holy hell. The pure excitement!
Still mostly a day of being in and out of it, and in a ton of pain still (the pain I had before all of this stuff).
Begin to worry about Monday’s appointment with the special surgeon due to the snow and knowing that my spouse is useless. I need physical help walking due to POTS and especially after the hospital stay and now the norovirus, I am weak AF.
Monday – Early Morning – At Home
Right now, I can’t rest and I feel sort of stable enough to shower. I have a shower stool I just got a month ago so yay for that?
Throughout all of this my best friend Mary called me daily while I was in the hospital, my sister texts a few times a day and said she might be able to take me to my PET scan on the 9th. My brother-in-law talks to me.
I’m sure I’ve already forgotten a bunch of stuff. It’s beyond overwhelming.
What is a support system supposed to look like? Everything I’m being told (from the billion of phone calls), it’s super important that I have one but… what does support for cancer look like?? Before this… a typical day was talking to only my sons, maybe sharing some social media stuff with my sister and best friend… that’s it. Literally.
Wish me luck on my surgeon #1 appointment today, nervous due to the spouse and the snow and my weakness level.
I wish I had something better to say other than I am so so sorry to hear this. I know the universe has been kicking your ass for years & I know you are emotionally & physically drained. BUT! It’s time to kick the universe back. Thankfully they caught it now before it got any worse. I’ll be thinking of you & looking for updates as you go through this process. I hope you find some peace & can eat some good meals (& keep them down)! Also, great on both of your sons for looking after you. 🖤
Thank you, I really appreciate that!
Damn. I’m so sorry… The good thing is you now have answers. Good for you for advocating for yourself when they’re trying to tell you it’s a UTI. Seems like your boys love you and are being helpful and supportive. You’re a strong and resilient person, so I have no doubt you’re going to give it a hell of a fight. If you want to chat, or vent, I’m here.
Thank you, I may have to take you up on that offer. I am so freaked out and overwhelmed.