I don’t expect to have many profound ideas or thoughts that come out of this whole journey. However, I did realize that when there’s something I really want out of all of this, I really need to focus and work for it.
For example, Mayo got used to me hating Lovenox, the anti-blood clot shot they stuck in my abdomen. Here at Methodist, they automatically ordered it for me when I was admitted. I had to spend a day and a half pleading with the nurses to remove it from my chart and proving to them I can walk these halls multiple times a day no matter how bad my fever is to avoid getting that damn shot.
I also hate lugging around my new best friend Mr. Saline IV bag because he has to go everywhere with me. I had to promise the nurses that I’d be constantly drinking water yesterday. Finally they relented and unhooked it so I could be free to move around without dragging it with me. The worst is when I forget it’s plugged into the wall when charging, I get up to go to the bathroom, and I get pulled back like a cartoon, except it’s connected to a needle in my arm and it hurts.
I have to be my own healthcare advocate on this stuff. It’s not that I don’t trust the doctors and nurses as it is their job to make sure I’m healthy, I just find that I can do some things more conveniently than others. In this case it’s easier to walk 2,000 steps a day and drink 120oz of water vs getting shot in the stomach and being hooked up to an IV bag for 10 hours a day.
Yesterday morning I felt really good. I slept from 11-2 when they took my vitals and 2-5 when they did it again and had to draw blood. The room is very comfortable and quiet so it allowed me the rest that I desperately needed.
I told Kenzie the nursing assistant that I felt well enough to take a shower. I asked her for the garbage bag sleeve like the one they gave me at Mayo. She laughed and was like “uh no we have more advanced stuff here”.
She put gauze on top of my IV, put a plastic sheet over my arm., and then peeled the sheet back. It’s like space age saran wrap.
The shower I took was basically medicinal for me. I was able to wash off all the grease and sweat from the last 2 days and the steam allowed me to cough up thick brown crap that’s been accumulating in my lungs but it hurt too much to cough.
I actually realized that I was only at a level 2 pain when I woke up and I didn’t need to ask for any painkillers like I have been every morning for the last week and a half. Dr. Miller came in later in the morning and confirmed that I did not have lung toxicity as they would have seen a white cloudiness throughout both of my lungs. In my scans I only had that cloudiness in a specific area of my right lung. This confirms that I had Atelectasis which is a pinched or partially collapsed lung due to my tumor pushing on it and trapping bacteria and fluid in there.
When I met with Dr. Shelver the previous night, he made an order for an anti-inflammatory IV drip called toradol. He realized that the pain killers were only masking the pain and wasn’t fixing the actual issues which was inflammation of my right lung. Toradol was put in my system while I was sleeping and when I woke up, I was mostly pain-free and able to cough.
The only drawback to toradol is that it’s hard on the kidneys so I can have it once a day at most.
They won’t release me from the hospital until I can go 24 hours without a fever. So far, not so good. All day yesterday it was just a repeating cycle of checking my vitals, finding my fever went up again, giving me tylenol, waiting for it to drop, and repeat. At one point it was at 100.4, not cause for super concern so Nurse Ryan put a cold towel on my forehead. I gave him crap for the medically advanced solution they were able to come up with to handle my fever. He said if it’s good enough for my mom, it’ll work for you.
I was able to get a chart of my temperature checks from the last 48 hours.
My whole family and Joanna was busy doing their regular Saturday stuff so I was on my own at the hospital for the morning. I asked my friend Sandy to visit. She asked if there’s anything I needed while she was on her way here and I had a huge craving for beef jerky. Sandy is a vegetarian and a saint for going to Von Hanson’s butcher store to get me salted pieces of cow to chew on.
It was a very nice visit and she gladly complied to my visitor rules of tying her hair back and wearing a mask.
I had hoped that maybe the hospital could get turkey dinner right for my lunch….I was so wrong.
The turkey meat fell apart as you picked it up with your fork, it was also dripping with “juice”. Gravy was a salty corn starch slurry, mash potatoes were a mushy powder. I told Nurse Ryan to take it away after I tried choking down half it, saying that I think it made my cancer worse. Honestly I think the people that supply the food here also supply prisoner food.
Thankfully I was able to order an alternate room service.
Joanna stopped by Pings, her parent’s restaurant (1401 Nicollet Ave, Minneapolis, MN 55403) and picked up food for me. Seriously go there, they have a really good lunch buffet during the week. My favorites are the Pings Fried rice, sesame chicken, and curry crab puffs. Maybe tell them I’m blatantly advertising on my blog and they’ll give you a free pop, no promises.
I was super happy to see Joanna today. The last time we got to hang out was on Monday when I was discharged from Mayo clinic. After that I saw her when I was admitted to the ER on Thursday night but I don’t really count that.
We picked a random movie from the hospital movie library, Eat Pray Love. Before it started, I said “Isn’t that movie with James Franco in it?” *spoiler alert* It was.
Movie was really dumb and obviously geared towards 40 something women bored in their marriages. The main character divorces her husband to go on an epic journey to Eat, Pray, and Love in Italy, India, and Indonesia. I scoffed and said I could put that itinerary together in an afternoon without leaving Joanna behind.
It was nice just to be “normal” for a few hours and hang out with Joanna.
After the movie I was feeling really sleepy. She said it made sense since my body’s been fighting the infection with constant fevers and my resting heart rate has been 120bpm all day. I promptly passed out for almost 2 hours and woke up with the highest fever I’ve had so far 102.9f.
I couldn’t move, barely talk, and was so weak. It took about an hour and a half for my fever to go down and my energy level came back, it was crazy.
Originally I was going to title this post “Riding the Thermometer Roller Coaster” but something happened last night that really ruined my day.
At around 8pm the same horrible Indian woman who was the last to take my blood on Friday night came into my room. I told her that last time hurt and she said “oh you’ll be fine you have good veins”. Knowing this does not help my situation or make it hurt any less.
She needed to do blood cultures by filling 4 bottles of blood, 5ml each, 2 on each arm. Meaning she had to stab me in both arms.
Pretty much everyone that’s come in to take blood from me has been super empathetic and nice. This woman came in, stabbed me, and pulled the needle out instead of clicking the spring which shoots it out quickly. So feeling the draagggg of the needle go in and out of me was excruciating. Especially since she did it on my right hand. When she pulled the left needle out, my blood dripped out onto my pillow. WTF.
After she stole all 20ml of blood, my face got flushed and I got super light headed. My dad went and got me ice cream for being a brave boy and for the sugar.
The nurses were horrified when I told them what happened. They said if she comes back here again, call them and they’ll turn her away and get a new person.
I went to bed at around 11:30 and woke up covered in sweat at 2am when they came in to take vitals. I asked for another change of clothes and went back to sleep.
I woke up again at 4:30 even more soaked in sweat to the point where I needed them to change my bedsheets. I felt embarassed and bad to trouble the nurses. They said it’s not my fault, not to worry about it because that’s their job, and this is what they’re here for.
I’ve been through so much and I’m only starting week 3 of treatment!
I hear you buddy, this sounds like another really difficult day.
I won’t give you all the standard cliches since I’m guessing you’re sick of them by now. I’ll just say that I’m thinking about you.
You are a really good writer, please keep these posts coming. As much as I’m saddened by the struggle you’re going through, I’m grateful that you’re sharing it with the us.
Thanks Brandon, I really enjoy the writing and I appreciate that you’re enjoying reading my posts. Blogging has been a really good exercise for me to collect my thoughts and emotions within all this chaos and turmoil by organizing it in such a way so that others can relate to what I’m going through I’m almost at the 1 month mark and it’s been both a really fast and slow month where all the days just blur together. Can’t believe I’ve been in the hospital for 4 days already.