A Change of Plans, A Hostage Situation, and Why You Need to Be Tour Own Advocate

It's been quite a week. 

Dad visited this week, and THANK GOD. Monday, I got a call from my Oncology office. Their radiation machine was broken, so no treatment. I wish that was all that happened. 

Tuesday, I was having a rough day. I basically hadn't slept. Lois (my tumor) decided a couple days without radiation and that bitch was going to act up. There was bleeding. A bunch. I still managed to get up and get dressed. Literally. I put on a dress that was basically a cute t shirt. It was handy, easy, and COVERED in pet hair. Just before Dad and I needed to leave, I went to the bathroom and it was like a crime scene. I came out, and Dad asked if I was okay. I was definitely not, so we called the Oncology office on the way to see if I should go to treatment or the ER. Given how I was feeling, they said ER, so off we went. 

When we got there, I immediately sat in a chair while Dad stood in line to check me in. They had to talk to me, so I came to the little window. The woman had been writing on a white card. She scrapped that and wrote on a red card once she saw me. I was white as a sheet and they brought over a wheelchair ASAP. 

Now, this not being my first rodeo, I knew they were going to do an EKG, see that my heart was beating mile a minute and then I'd be getting blood drawn, most likely resulting in another transfusion. This trip was a tad more eventful. First, my doctor was the same lady as 2 weeks ago, so she pretty much knew the drill. After they moved me through about 5 beds (not even exaggerating), they drew blood, did their testing and blood matching with the blood bank. In the meantime, no amount of heated blankets could keep me warm. Between the entire ER being a damn ice box and the fact that my hemoglobin was 5 (new PR!), I was already cold, but add in that I'd been running a low grade fever (this will be important later), and I was just shaking. Even Dad was cold, and a water bottle that had been in my 100 degree car for the drive over re-chilled while we were there. 

Another exciting side note. I fainted for the first time. They wheeled me to the bathroom and I did my thing okay. When I opened the door, the wheelchair was about 3 feet away. I took one step and became liquid Daanielle and just collapsed. Thankfully, my transport guy saw me going down and broke my fall, so no brain damage. Probably. Thanks, transport guy! After about a half dozen doctors and nurses surrounded us and made sure I was okay, they wheeled me back to my freezer. 

Anyway. The doctor let me know I'd be getting 4 units of blood (another PR) and that since I'd had multiple transfusions, they had to pump the blood into me a little more slowly to ensure no negative reactions and to make sure I wasn't building up antibodies. Made sense. It would be an overnight stay. They moved me up to a slightly warmer room (not by a lot) and a slightly better bed (still awful). 

This is where things began to go horribly wrong. Not like going to the ER wasn't the beginning, but there was a plan. Get vampire juice and go home. 

Before I go any further, I should tell you a slight fever and diarrhea are side effects of radiation. You're literally killing cells in your body and there are dead tumor cells just hanging out. Of course your body is going to react and get rid of them. 

So I'm hanging out in my new room, and the nurses have to check your vitals approximately every 8 minutes to make sure you're not dead. My nurse is panicked that I have a fever, and even more panicked that my heart was working so hard. Seriously. I have no blood. It's trying to pump the tiny bit I have to my whole body, and it only shoots up when I get up...which makes sense, seeing as how it's easier to spread blood when my body is laying flat and gravity does the work. I try to calm her, and when she checks in with the new floor doctor upstairs, doc concurs. 

That's about the last time I liked that doctor. A bit later, it's announced that I'm getting a chest X-ray. They're checking for infections. Okay. I guess. They're being cautious. They also kept checking my blood sugar because I take Metformin, despite me telling them I'm not diabetic. I ate my dinner after that, or rather, choked down the beef and potatoes with gravy, drank my milk, and avoided the rest of the tray. 

Throughout the night, I woke up for vitals and Tylenol for the fever. It spiked up higher than it had been. Probably because I was adjusting to my new blood, but that's my theory. 

The next morning, I woke up, nibbled from my breakfast tray. Milk was the only safe thing, but I managed to eat some egg whites and about half a tiny bran muffin. Shortly after, the upset stomach hit. I went to the bathroom and something unleashed. Some sort of nuclear waste was expelled from my body. I've had tummy issues before. It was not on this level. And with each round came a lot of blood. 

I dutifully reported this to my nurse. I'm a good patient like that. They put an awful plastic thing in my toilet to catch my poop and collect a stool sample, to go along with my urine sample from earlier. 

At some point in all this, the staff became worried that I had C Diff Colitis, which spreads through contact. So everyone who came in my room had to wear a stupid yellow rain poncho that only covered the front and wasn't long enough for legs. The nurses wore gloves. Dad and the boy decided just to wash their hands. The reason they thought I might infect the whole hospital with Ebola or whatever was because I had taken antibiotics like a month ago. So they started giving me antibiotics. I couldn't make sense of that one. 

Once my transfusion had been done 4 hours, a phlebotomist came in to do a blood culture, which basically tests to make sure there aren't any infections and I'm accepting the blood okay. Never had that done before, but with the fever and all, made sense. A few hours later, the nurse comes to tell me I'm getting a CT scan of my abdomen, to check for colitis, since I had diarrhea. Seemed unnecessary, since I was convinced it was hospital food, but whatever. I drank the contrast fluid, which had been mixed with what I assume was rancid lemonade, and really woke my colon up. I waited 2 hours, then got wheeled to the CT place and pushed back and forth through what felt like a very large donut. At one point, they forced iodine through my IV. That is an unpleasant feeling, in case you were wondering. Especially in the chest. 

Back upstairs, the nurse said they'd talked to my oncologist, who said if all these tests came back clear, I could go home. 

So we waited. 

And waited. 

And waited. 

By noon on Thursday, I had been allowed to sleep through the night, save a Tylenol break or two. I had no tests to do, we were just waiting on results. If you're in a hospital and they're not bugging you at least hourly, you don't belong in a hospital. Just my opinion. The floor doctor told me she had ordered a consult with an infectious diseases specialist. Because they couldn't find anything so far, so they wanted to keep looking. 

Fine. So we waited more. Around 3:00, my oncologist called to see how I was doing. Apparently, they neglected to tell her their test results took an act of Congress to come back, so she thought I was out. I let her know the situation. I feel like I could hear her eyes rolling through the phone. She said I had dead tumor tissue and that was likely causing the fever, and diarrhea is a radiation symptom. She called the hospital, and the doctor was there soon, telling me they just didn't want to let me go without making sure I was okay. I agreed to wait for the infectious diseases guy. Turns out, she's asked for that consult around 5 am, but apparently didn't follow up and by 5 pm, he wasn't there. 

He finally showed up around 5:20, and by then, I was PISSED. He came into my room and not 4 minutes into the visit, he checked his phone. I asked after all the tests they had done, what he thought was wrong, aside from el cancer. He couldn't really give me a definitive answer. I got the impression he hadn't even read my chart. And when I was asking him the question, he told me to let him talk first. Bad move, buddy. After a brief and stupid exam (literally did the same exam as EVERY OTHER DOCTOR, in addition to knocking on my chest and poking my back), he determined that if this were a radiation fever, I would not have chills. Since I was shivering, I had to have an infection. My room was SEVENTY THREE DEGREES. I was cold. We keep our AC at 76 and I get chilly. It's called being anemic. Anyway, the infectious diseases guy said if my oncologist was confident it was the radiation, he'd let me go. 

A half hour later, no discharge papers. I had literally wasted an entire day in that god forsaken hospital and they were still holding me. I texted my oncologist and miraculously, they had papers in 10 minutes. 

The papers included a prescription for more antibiotics. Still no idea what the hell they're for. Oncologist said to take them anyway, to be safe. 

Here's what I learned from this adventure: you can't always trust doctors to look out for your best interest. If I'm being optimistic, they were being overly cautious because they were genuinely worried. My pessimistic side says I have damn good insurance and she gets paid by the procedure. The answer probably lies somewhere in between, but my instincts were right the whole time. 

I've never had a situation where I felt a doctor was on the wrong track for care, and when I voiced my concerns, I felt I wasn't being listened to. Thankfully, the doctor most familiar with my situation gets shit done. 

It's hard to trust your instincts, especially when you're surrounded by "experts" in a field where you aren't trained or educated. Fortunately, I have researched my conditions pretty thoroughly, and I didn't ignore the little things. Like the doctor asking why I wasn't eating my lunch, opting for saltines and ginger ale. Uh, because that's what you eat when your tummy is upset. Ask a mom. Any mom. They know. How does a physician ask such a dumb question? Gee, toxic waste came from my colon. Should I have tacos (from a hospital, nonetheless!) or crackers? 

The other thing that never sat right was that they kept looking for complicated issues, when there was an obvious answer right in front of their faces. Does she have Ebola? Colitis? No. I have a tumor. And if you're a doctor who doesn't know what kinds of side effects a tumor/radiation can bring, maybe call the oncologist whose name I gave you?

For the record, as soon as I left that frozen hell of a hospital, I took an Imodium AD tablet, some Gas-X, and an Aleve. I had real food and the digestive issues are settling. The next morning, I was back to a minimal fever (100.1) and no shivering. Because my room is more than 70 degrees. 

This was such a frustrating ordeal, but I'm glad I learned to trust my own knowledge more and that I stood up for myself. 

P.S. - Because no hospital visit of mine can be too dull, my sister had a late night photo session taking pictures of my blood and my room. I added my selfie to this journal entry, but hop on over to my photo gallery for sis's artsy pictures.