hospital

I don’t trust my body. It’s a really terrifying place to be when my brain just doesn’t trust my body anymore. At every turn it’s trying to kill me. That sounds dramatic but it’s the reality I’m facing. When you throw in a questionable medical system - well it’s hard to know what to do, who to trust, and believe your body will survive. The year ended and started in a very dark and scary place.

The last week of the year I visited my cancer center because I had a rash - a side effect from the Immunotherapy. When I was there, they did labs and found I’m neutropenic. Basically, I have no immune system. This is from my treatment of the Red Devil and happens often for people in chemotherapy. The physician’s assistant told me to keep an eye on my temperature - if it goes above 100.5 for more than one hour to call them no matter what time of day. She said they’d prescribe antibiotics and if those don’t bring the fever down it’s straight to the hospital. Well, on Friday, it was 100.8. I called and the doctor on call said immediately go to the hospital. I questioned this - considering how packed our hospital system is right now from the COVID surge. Also, I didn’t feel great, but I didn’t feel terrible. His reasoning was to get a COVID test. I have a few tests here so I tested at home - it was immediately positive. After a call to my surgical oncologist to confirm if I should go to the hospital I packed a bag and drove myself to the ER. In my gut I felt like this was dramatic - just give me antibiotics. But, it’s unprecedented to have a neutropenic fever and COVID at the same time.

Despite our overwhelmed hospitals - the hospital got me back and seen immediately. The ER doctor agreed with what my cancer center initially said - he believes I should be prescribed antibiotics and sent home. They started antibiotics and I immediately felt better. Like 100% to myself within 2 hours of being at the hospital. They did blood work and found I have half of a white blood cell. The on call oncologist disagreed with the ER doctor and immediately had me admitted. At this time, I was in a closet turned room - bare bones and on an uncomfortable stretcher. My anxiety was through the roof when they said they might not get me a bed until the morning and I would be in this room overnight. I later learned the room was a former psych holding room - which confirms why I was so anxious.

Thankfully, within six hours they got me a room. Around 7pm I was transferred to the neuro floor to my own room. I was terrified and bummed to be spending New Year’s Eve in the hospital - but wow I was grateful to be in a real room.

Some blood work showed I might have a blood clot in my lung. They took me for a CT because the x-ray was showing clear lungs. The CT confirmed no blood clot in my lung - great news. This was a scary few hours. Thankfully, I have the HCA Hospital app which allows me to check my own records - blood work, radiology reports, I have access to it all. So, I never waited on the doctor to come by, I already knew my CT was clear before I went to sleep.

I watched the new year creep in from a hospital bed. Alone. And terrified. Something I never imagined, especially at 33. I prayed and hoped that this would be the worst of it for 2021/2022. Only time will tell!

Saturday brought a platelet and blood transfusion. I was still only working with half of a white blood cell. I was starting to believe I was where I was supposed to be. But, still, I felt good. COVID symptoms were mild if nonexistent. Thankful my booster shot and those antibodies were being put to good work even without an immune system. At this point the IV in my arm had blown and they couldn’t find any other veins after much searching with the vein finder. The nurses had to wait for a nurse from the chemo floor to be available to access my port to give me fluids and the rest of my antibiotics. Once my port was accessed I was much more comfortable. Though, the blown vein has left a nasty large bruise on my arm.

I am so very thankful for my mom who came and got Willow. Rachel packed me more clothes and dropped them at the hospital with the best framed picture of my sweet Willow. Virginia brought me dinner and snacks for my stay! And my sister brought more clothes on Sunday when it seemed I’d be there for a while.

By Saturday afternoon I was convinced I no longer needed to be in the hospital. I started making my case in my head and Sunday morning I asked for the oncologist immediately. The hospitalist making rounds agreed - I should be home on antibiotics. The oncologist on call visited me and said he disagreed. He said “your immune system is still too low. I need your counts to be up for two days consistently before I can release you. If I release you, you could go down hill quickly. You will die at home within hours.” I’m sorry, what? I’m suddenly dying? But I feel good. If this is dying then I’ve been dying for a while…

This is where the distrust in my body comes in. It’s hard to argue with an oncologist when they tell you your situation is dire and you will die if you leave. This felt so dramatic - but again - who do I trust? Also, to note, this reaction had nothing to do with the COVID and 100% about my neutropenic fever. Without an immune system the smallest bacteria can knock you out. BUT, my argument was, I’m exposed to a heck of a lot more bacteria here in this hospital than at home.

Sunday was HARD. I kept wrestling in my head - I don’t need to be here. But, if I left and did go down hill would I even get back in to the hospital? Also, I don’t trust myself enough to leave against medical advice. And, Insurance can become a pain if you ever leave AMA.

It started snowing Monday morning. I woke up again determined to get out - but now scared to actually leave. I called my cancer center and left a message to talk to my oncologist. I also texted my surgical oncologist to get me in touch with Dr. Friedman. When Dr. Friedman called, I immediately cried hearing her voice. She agreed - I shouldn’t be there. I felt a lot better about leaving after talking to her. She knows me and knows my body. I trust her. She called the new oncologist on call making rounds and he was already working on my discharge. So I now had 2 oncologists agreeing to discharge me. He came to my room and told me to get home and take my antibiotics. Both doctors said the oncologist that I saw throughout the weekend is “like that” and tends to be “dramatic” which infuriated me. But, I focused on the good - I feel good, COVID symptoms are still mild, and I’m full of antibiotics! I’m going home!!

Also, at this point I now have 2 white blood cells! My 1 had made a friend and I was hoping they were partying and making more friends!

The city was now covered in snow so I had to arrange a ride. I didn’t even have a coat! When I went in on Friday it was like 70 degrees and sunny. I packed and I’ve never been happier to be at home. Thankfully my sister braved the snow and got me home safely!

I took a long hot shower, washed everything from the hospital, and relaxed. I slept like a rock and logged in to work today, Tuesday.

So back to that trust thing. My gut was right. I wasn’t dying. I could have been on the verge of dying had I not gotten on antibiotics. But, I should have been home on antibiotics. Not spending my most expensive New Year’s yet in the hospital.

Honestly, this entire ordeal was a little traumatic. The fact I had to face it all utterly alone is something I kind of can’t comprehend. I’m so thankful for my day nurse I had most of the stay - she sat and chatted with me. She knew I needed human interaction. Despite being incredibly busy - she kept me going. Erin, if you find this, thank you!

I have learned my lesson, though. I need to take it easy. I need to give my body more of a fighting chance to rebuild its immune system after each treatment. I’ll be in hibernation mode until March.

Cheers to 2022 being better - I have all of the hope in the world for the year ahead!