I woke up feeling absolutely fantastic today. Energy levels were high, I was able to go outside to enjoy the sunshine on the way to Mayo, and I knew it was just going to be a good day. I got almost 6 hours of sleep last night which is more than I have since I started treatment.
I even sent this picture to a few friends saying “Kick ass today! If I can enjoy this beautiful day, so can you!”
Dad and I left the house at 6:30 to head to Mayo as today was sprint 2 of round 1 for my chemo.
Just as a reminder I have 4 rounds of chemo, 21 days long each.
One round of chemo consists of 3 sprints.
Sprint 1: 5 days (Mon-Fri)
Sprint 2: 1 day (Mon)
Sprint 3: 1 day (Mon)
Think of today as a booster shot of chemo. I had originally thought that they would give me the full gambit of drugs like I did during my stay at Mayo. I thought this was going to be my schedule for the day: blood test, results, then small iv in hand, steroid (2 min), anti nausea (1 hour), saline hydration (1 hour), chemo (1 hour), saline solution (1 hour), done.
In preparation for the day, I packed all my meds, laptop, book, headphones, and snacks.
On the way to Mayo, Speedy’s vet called saying that he did very well last night. He unfortunately had to wear a cone as they had to put a catheter in him but they can definitely understand why his name is Speedy. The vet said that I won’t have to worry at this point in time, they’ll continue flushing his system and he’ll be able to go home on Friday afternoon.
We got to Mayo before 9am and it was basically a waiting game. Wait to do blood work, wait for blood work results, wait for a chemo chair to open, wait for chemo drugs to be mixed and delivered…
While I was in the waiting room, I pulled off my mask to take a drink of water. I noticed a REALLY strong perfume smell coming from behind me. Dad confirmed saying that it has been bothering him since we sat down. This just tells me that the Vogmask that I’m wearing does work to filter out smells and pollutants. Very cool!
When I was admitted into the cancer area, they sat me into a cubicle with my own recliner. The chair was comfy as it had massage and heat features. I noticed there were individual rooms with beds too, they said that I could request one if one were available when I do my 5 day outpatient sprints.
To my surprise, they said that today chemo would only consist of a saline bag and a 10 min manual injection of bleomycin.
The whole chemo session was done within an hour from start to finish and we went to find lunch because I was STARVING. Lunch today in the cafeteria was Turkish meatballs, cous cous, creamed corn, and veggies. I was afraid it wasn’t enough so I also ordered a half chicken salad sandwich. At the end, I told my dad I might need to be wheeled out in a wheelchair to go home because of how much I ate.
On the way to the car, we ran into Nurse Kristy and I gave her an update on how well I’ve been doing since I was discharged a few days ago. She scolded me for taking off my mask to talk to her but gave me a hug and said she was happy to see me.
Once we got onto the freeway, I got a sudden hit of sleepiness. Dad told me to recline and take a nap which is what I did.
Do you want to see what it looks like when I wake up from an hour long nap at a level 7 pain?
Comparing my face with the chart above, it looks pretty accurate.
I immediately reached for the pain killers and noticed that I had ringing in my ears. It sounds like when you turn on the old CRT monitor tvs in your head. At this point I really felt like Derek was angry that I went back for more chemo and this was his way of fighting back.
We stopped at a Pilot trucker gas station so dad could make a pit stop. I chose to sit in the car because of how bad my pain was. I literally couldn’t move. We waited 20 min in the parking lot for the meds could kick in so I could go in to take a pee break too.
I saw this tshirt for sale and couldn’t help but laugh at myself. Maybe I should have bought it?
We got home around 3:30 after stopping by my house to pick up some stuff that I needed for the week. Remember how I felt amazing earlier in the day? At this point, I was so weak, I had to crawl up the stairs to get to my room. Yes, I did tell Jonathan to take a picture of me instead of helping me up the stairs. The blog is a priority!
I wrote yesterday’s Speedy related post, ate some dinner, and felt tired at 7pm.
The pain from my tumor and rib cage would not go away and was so bad that I found myself on my knees in my room clutching a pillow to help bare the coughing I couldn’t avoid. At this point I didn’t have a choice and in my mind called out to God that he “Help carry this burden of pain with me and allow it to go away.”
I walked through my regular regimen of taking my anti nausea pills and pain killers, then got into bed. I know I fell asleep around 7:20 because that’s the last time I sent a text message out. I shot awake at 7:45 really frustrated that I only slept 20 minutes when I was so tired.
I had a lot of side effects happening at the same time.
- Slight dizziness and headache
- Loud ringing in my ears
- Fingers were slightly numb
- Tip of my tongue was numb
- Teeth were slightly numb
- Dry mouth
- Shallow breathing
- Side, back, and tumor hurt really badly
- I was shivering a lot
I had the feeling that I was about to get a fever so I asked my dad to take my temperature. I guess he didn’t want to use the one we had at home so he told mom to go out and buy one. While she was doing that, I was lightly packing up my backpack in case I needed to go to the ER, just in case. As I mentioned before, the staff at Mayo said that if I have a fever above 100.4 rush to the hospital as fast as possible.
Dad threatened to take my phone away because I’m not taking “resting” seriously. I listed of all the symptoms that I had and that I really tried going to sleep for at least a few hours.
Mom brought a forehead thermometer, I wasn’t sure why she needed to get so fancy. I was feeling really warm and dad just sat there casually reading the manual on how to use it.
I yell at him, “Check my temperature already!” He replies “How do you know how it works without reading the manual?”
He swipes the thermometer on my forehead. I have a 102f fever.
We all go into panic mode and try to determine which ER to go to.
Ok this is where I got really angry. I know that I could go to Methodist in St. Louis Park but Fairview Southdale is half the distance. I called the Healthpartners member line to see if Southdale was within my network but the offices were closed. I called Southdale Emergency Services to confirm that they are within my network and I get transferred to 2 different places, both who don’t know if my ER stay would be 100% covered by my insurance.
Mom’s asking if we should take an ambulance but then dismissed that idea in case they took us to a non in-network hospital.
I’m yelling at dad to just take me to Methodist because I’m so frustrated with how stupid of a system this is.
We get to Methodist ER and I check in at the front desk. The lady was in the middle of putting sunflower seeds in her mouth when I walked up. I made sure I used a few extra spritzes of hand sanitizer after working with her.
The nurse that admitted me wasn’t great either, she was 2 finger touch typing on the keyboard, asked me 4 times what my temperature (102f) was AFTER she took it herself, and didn’t even know what day it was. I became upset because I thought this was an emergency and I didn’t feel like people were treating it as such. She led me to the hospital room but was walking at a regular pace while I slowly trailed behind clutching my mid section. “Oh…did you want a wheelchair?” she asked.
I sat in the hospital room for probably a few hours. They took about 57ml of blood from me to test for infection and around 11pm they said that I had pneumonia.
The plan was to admit me into the oncology ward at the hospital and keep me under surveillance for 2 days. They started an IV drip of antibiotics to combat the pneumonia.
It was at this point where I felt like I let my family down because I allowed myself to get even sicker. Did I not use enough hand sanitizer? Wash my hands enough? Wear my mask enough?
Eventually, I was wheeled up to my own room where I get to meet and work with a whole new team of nurses.
Because of the pneumonia, my breathing was really short, they gave me a nebulizer to help open my airways. It looks pretty cool.
Mom, Dad, and Joanna left me at 1am but I still had a bunch of questions to answer for the nurses. I was allowed to go to sleep at 1:30 but it didn’t do much because I was sleeping with 2 IV drip bags which woke me up every half hour to pee. I woke up at 2:10 to pee, 2:45 because my body was shivering and my fever came back at 100.3, and 3:20 again to pee.
At this point I got frustrated and stayed up to write this blog post since I got this text from a friend yesterday:
Phil : Yo, where dat blog post at?
Phil : (Just kidding)
I’m glad I didn’t go back to sleep because another bloodsucker came in at 4am to take another 20 ml of blood. Total I’ve donated at least 100ml of blood today.
Here’s my Snapchat story on how tonight went, I think I did a pretty good job detailing events that happened.
So concludes the recap of my day where I started feeling amazing at the beginning and then ended it feeling not so amazing. I had already prepared mentally that each chemo session was going to knock me back down a little bit but I wasn’t expecting this.
I have a few friends that were planning on visiting me throughout the week but for now, I’m going to cancel all visits since my immune system is so weak, sorry guys.
When I am allowed visitors again, here are a list of rules that MUST be followed:
Visitation Rules
- Bring a change of clothes
- Wear face mask and gloves
- I can’t see anyone that lives with kids or pets
- If you have long hair, it has to be tied up
- Douse yourself in sanitizer
I’ll be adding more to this list but I just wanted to throw it out there for now.
So, do you agree that those socks with suction cup rubber grips make you feel like an octopus? Just sayin’….!
My thoughts: Do t blame yourself and question what you might have done to have your fever go up! That kind of self-bashing sucks the life out of you! The list you made for visitors is pro-active, so if I could come visit you, I’d be all right to pack along some fried okra and peach ice cream ‘cause you never mentioned that, ok?!!! 👌😉🙏
They make me feel like a toddler learning to walk :p
Hushpuppies too?
Hey Andrew, I’m a mom of a 29yr old son with a rare and aggressive form of liver cancer. He’s had surgery to remove his large tumor and he’s finished 4 rounds of chemo and is in the middle of radiation treatment. Your perspective on your journey has been enlightening, as my son plays the “strong” card and doesn’t share everything for fear of worrying me too much. So, I really appreciate your transparency and honesty.
We are also believers, and I am certain that when we face these trials we are carried through them by our loving Heavenly Father. I admire your continued faith and that of your family, your dad is a rockstar! What a great example!
Y’all are in my prayers! I pray for strength for you and your father to get though these physical trials, and for peace and comfort for your spiritual walk. I pray for your mother, and your loved ones and for the hands of all the nurses and doctors. May y’all be a living testimony to those around you!! HE’s got you!!
Please pray for my son, Ken, and his wife and kids. They’re in the trenches too, fighting this horrible enemy. We’re believing for a total and complete healing victory!!
Can I tell you that it’s comments like these that make me keep going on the blog? Some posts take 3-4 hours to write each day because I’m my own worst critic but I seriously cannot believe that jotting down the thoughts in my head are actually helping people out in the world.
I will definitely add your family to my prayer devotional time today. Please feel free to provide me updates on how he’s doing and how I can better help you help your son and his family <3