Last night was another rough night. Went through 2 more sets of scrubs and a set of bedsheets due to my night sweats. I know this is a cancer related thing but I can’t help but feel like my body is having a hard time adjusting to all these new drug cocktails so it’s stressing out at night and can’t relax? I dunno just a thought.
Dr. Kokoszkka and Dr. Baker came into my room in the morning and explained the situation; I’m free to go home today. They’re confident enough that the Naproxen will manage my temperature until I can get to the Mayo clinic and talk to a doctor before I get my Bleomycin booster shot on Thursday.
I thanked them for working so hard to help unravel the mystery as to why I’ve been getting the fevers and that I didn’t mind being in the hospital for 6 days because I was getting the best of care.
Quick shoutout to the doctor team that worked on my treatment plan
I also wanted to do one for the nursing staff but I didn’t have access to their pics like I did last time.
While my parents were cleaning up the room and packing up my stuff, I went ahead and took a final shower. I was not expecting the amount of hair loss that happened.
You know when you get a hair cut and then take that first shower when you get home? Maybe you wash your hair one extra time just to get the extra bits out of your head. For me, my hair did not stop coming out. Head hair, armpit hair, pubic hair, leg hair, it was all just coming loose and mixing with the soap on my hands. I didn’t feel comfortable getting out of the shower because I felt so unclean.
My logical side knew this was goign to happen, prepared for it by dying my hair to maintain control of the situation and counting the days from when I first started treatment. My lizard brain however started feeling like something was wrong with my body and started panicking. I had to deal with this internal battle while in the shower.
I finally decided to get out and towel off. I think I may have lost 1/8 of my head hair. Seeing them in the towel like this makes me think of porcupine quills because they’re similarly colored.
I got dressed and sat on my bed while my parents were still cleaning things up around the room. I know for at least the first few weeks of the blog, I’ve mentioned that besides my cough, I didn’t really have any external features that indicated that I was sick. I now felt I had that and that I am truly sick.
I broke.
Mom tried downplaying the situation by saying that the stress is leading to her losing her hair too.
“I HAVE CANCER THIS IS DIFFERENT!” I sobbed
Dad gave me a hug and told me that he’s going to keep walking with me even though today is a hard day. I cried to him “I knew this was going to happen but I didn’t know I was going to feel so scared.”
I’m a visual person so I took a quick picture in the heat of the moment for good measure and illustrative purposes.
I was forced to compose myself immediately after because the nurse knocked on the door with my discharge papers. She explained my medication list and schedule and told me to present this set of documents to the Mayo clinic staff once we arrived.
Just the act of getting into the car, driving home, and getting into the house was exhausting for me. The most exercise I would do is walking 700 steps or 15 min of slow paced walking on my floor at one time. My body has definitely atrophied considering I spent 6 days at Mayo, 3 days at home, then another 6 days at Methodist. Given the 1 hospital day to 3 recovery day ratio, I have 11 hospital days I need to make up for. Just sitting in the car was difficult for my back muscles since I was either walking or laying at an angle, never sitting up.
I had a present waiting for me at home. My best friend Rob in elementary school and his girlfriend Kathleen got me THE UGLIEST STUPIDEST pillow I have ever seen.
I LOVED THE GIFT
Doubly so because they took a picture I had uploaded to Facebook and so the resolution was already terrible quality. The fact that I have a grainy pillow version of Speedy is hilarious. I couldn’t stop laughing for several minutes. Throughout the day from the corner of my eye, it would trick me because I put it in the real Speedy’s favorite parts of the house. I also almost stepped on it twice.
Very very cretive gift guys since I can’t be around Speedy until after chemo in September.
I had some lunch, repacked my bags in case I needed to stay at Mayo for a few days, and took a 2 hour long nap because I was totally exhausted.
My blood tests from the morning showed that my white blood cell count has passed the minimum threshold of 1. The morning test showed I was at a .8 and should expect that number to continue dipping. This means that my immune system is weakening and I need to be extra careful with wearing my mask in public and who I interact with.
My friend Luke offered to buy me a zorb for me to live in for the next few weeks.
Dad wanted to head to Rochester in the afternoon to see if I could talk to a doctor right away before I had my chemo booster the following day. My fevers are only being kept in check because of the Naproxen and I’m taking a new anti-biotic, Levofloxacin. Both medications are hard on my kidneys so we figured the best way to talk to an oncology doctor right away would be to go to Mayo clinic’s ER and hope to see one. This means I literally got discharged from one hospital just to drive an hour and a half to go another one….this is so much fun guys ಠ_ಠ
We checked into our hotel in Roch around 7pm. Dad asked what I wanted to eat. I had prepared for that question the entire car ride down. The Grand Grill was right in downtown Rochester and they had a 10oz Prime Rib dinner for $22 that I had my mind set on. The plan was to get dinner and then head to St. Mary’s ER hospital to figure out next steps.
I’m pretty sure I showed that steak and everyone who expected my appetite to disappear during chemo who’s boss.
While this was no 16oz aged prime quality prime rib from Wildfire steakhouse in Eden Prairie, this one did the trick. 2 straight weeks of having needles jabbed in me by blood suckers and hospital meatloaf made me crave actual meat. My hemoglobin levels are lower than normal because of my cancer and so I need some iron rich foods like meat and green veggies to supplement that for my body to make more blood n stuff.
I paid for dinner which was only fair because my parents had to get a hotel room for the night. We headed to St. Mary’s Hospital with the hopes of talking with someone in their oncology department.
General ER rules dictate that if your life isn’t in danger, you’re going to wait. We were admitted into a room at about 9:30 and didn’t talk to an oncologist until about midnight.
I know it’s at least a little weird I was hoping to get admitted back to the exact same floor of the hospital so I could see all the new friends I had made the week before.
Unfortunately, the Dr. felt that because my fever’s already in check there was no need to admit me. He said to not take the Naproxen, swap it for Tylenol and tell the staff at the cancer center what’s going on in the morning and they should be able to determine next steps….which is what he was supposed to do.
While just a little disappointed, at least there wasn’t additional things that were wrong with me. I was counting on being admitted because it was July 4th which meant ALL outpatient chemo patients were not able to get their treatments. Therefore, Mayo had to spread them out to the rest of the week. I knew that bloodwork in the morning would be a massive time sink, so would waiting for a cancer recliner, and for the pharmacy to mix my Bleo cocktail. All for a 30 sec blood test and 10 min injection.
I’m not looking forward to my booster tomorrow because it just means that I’ll go home with my energy zapped again and I’ll end up just laying around for a day and a half recouperating.
After the sadness of hair loss, that Speedy pillow was one of the most thoughtful perfect gifts ever! You are loved, buddy, and trying so hard to look on the bright side! 🙏 continue
I love that pillow. What a great gift. You devoured that steak. Holy Hannah! Can’t wait to FaceTime with you again. I think you made my week when you pointed out that the Methodist Instagram feed was all new babies and your review of their shitty pizza. That is truly the funniest thing I have seen in a long time.
Sorry to hear you’re having it so rough already. I check your blog every day since I found it to see how things are going for you. Have you experienced the chemo affecting your perception of food at all? It has been the most bizarre aspect for me. As someone who has always appreciated beef, I was very disappointed when it started having a plastic, chemical-like taste to it. I have turned to needing food to be extremely spicy, sweet, or sour in order to be palatable. I still force myself to eat enough, but it’s very odd. Wishing you the best, don’t hesitate to reach out if you ever need someone to talk to.
Thanks Ruben. Every day I’m learning new ways on how chemo has altered how I taste or perceive food.
I can’t drink tap water anymore, the variation that I experience from place to place is way to great and so I’ve been relying on drinking costco bottled water. Most days it tastes fine but while I was doing my 5 day chemo sprint, the taste of bottled water ranged from muddy metal flavor to sweet water.
The smell and taste of raw garlic or if it’s prominent in the dish makes me feel nauseous. I love eating fresh roasted garlic out of the bulb but I’m trying to stay far away from it right now until I’m better for fear that my unease with it will transfer back into normal life.
Foods that are really oily or greasy trigger the nausea too.
The last few days, things have tasted really salty or bitter to me.
I feel blessed that the chemo hasn’t affected my appetite, I’m always hungry but I think it might be because I had the string of fevers which resulted in my heart rate hovering around 120bmp and my metabolism just runs wild.
Good luck to you, don’t be shy to keep me updated on how your journey is going too. How much longer do you have?