I felt him in my chest last night, the anger, and the pain was building up inside. Up to this point, I never “felt” like I had a tumor in my chest besides the coughing but while I was on the phone with Joanna at around 9pm, I started a coughing fit. I could feel pain in my chest, a throbbing pain, and became short of breath as this tumor gripped tighter to the muscle fibers it was attached to since it’s begun to shrink.
I imagined that Derek was telling me that I needed to stop what I was doing because it was making him weaker and that he refused to leave. While a terrifying thought, I felt relieved to know that the chemotherapy was working so effectively in just 4 days. Nurse Jean asked me today how I was feeling and I told her about what happened last night. She agreed with me that it wasn’t in my mind and the treatment was truly working quickly and to my benefit.
Onto more uplifting news. I hadn’t seen Joanna since Wednesday, I knew that she was going to come today (Sunday) afternoon. I asked Nurse Erika if I could hug and kiss her because I’m not fully familiar with chemo rules yet. She found this pamphlet for me.
Considering I wasn’t planning on having hanky panky in my hospital room I needed to answer my question a little bit more specifically.
It turns out that 48 hours after the last chemo session, my bodily fluids are toxic to everyone around me (Evil superpower maybe?). Any clothes or bed sheets that come in contact with fluids must be washed twice, toilet lid needs to be closed and flushed twice, I cannot share food because of cross contamination. Which means in my case, hugs ok, kisses not ok. So I guess in a way, you could say that I have a real case of the Chemo Cooties.
To provide some additional context, chemotherapy introduces chemicals to the body that tells it to stop producing cells. Everyone’s familiar with the Hollywood depiction of hair falling out but it’s much more than that.
- You’ve already read about my reproduction system shutting down (possibly permanently)
- Mouth sores can develop
- Taste buds are affected
- Body stops producing white blood cells, which could lead to infection
- Nerve damage to your fingers and toes
- Ringing in the ears due to nerve damage
- Lung toxicity in my case of the types of meds they’re using.
On the flip side, the tumor also stops developing cancer cells and hopefully starves itself out and the body will remove the dead cell tissue.
It’s a very scary dance to be part of but so far things are looking good for me.
I wanted to provide an update on bodily changes so far for me specifically. Today I noticed that even though I’m hydrating like crazy, my hands and lips are starting to get dry. I asked Nurse Hannah if she had anything for it and she gave me this wonderful lotion and lip balm that smells lightly like vanilla. The hand lotion is thick and not greasy. I really like it. I asked Joanna if she smelled it and she said it didn’t smell like anything to her, maybe it’s the chemo that’s making me smell vanilla?
Today was both my hardest physically taxing day and mentally rewarding day.
It was a beautiful morning outside and on my first anti-lovenox walk of the day, Dad took me out to the patio on the 3rd floor. This is the first time I’ve been outside in 5 days. I think these pictures kind of tell it all.
My boss, Jason, and co-worker, Sumana, came to visit me today. They arrived at the same time as Joanna did and it was a really wonderful time of catching up with work stuff. I truly worked hard on the projects I was assigned the last 5 months and am still disappointed I wasn’t able to see them through fully. However, I’m elated to know that my co workers have done an awesome job picking up my slack and have made the projects successes their own. For that I have to say THANK YOU everyone in LOE at BIW!
Jason brought his marathon number for me as a keepsake. I’m definitely going to have to frame it. I told him that when I’m better, I’ll run a .5k marathon with him.
The cleaning people came by in the middle of the group’s visit and they decided to take me on another walk around the hospital. I showed them how big of a boy I was by walking up the stairs by myself on the 10th floor. However when we got to the end of the hallway, I started getting lightheaded, nauseous, the color drained from my face, and my vision got spotty and dim. I pointed out the wheelchair about 5 ft away to Joanna and she swiftly jumped into action putting me in it and taking me back to the 4th floor where I flopped back into my bed and the nurses checked on my vital signs.
This episode was a close call and just a sign of how the chemo drugs have affected the energy levels in my body. Nurse Hannah said that if that happens again, I should sit on the floor (even though it’s filthy) and call for help because it would reduce the risk of injury if I actually do faint.
My friends went home and it was time to prep for my last round of chemo therapy for the week. My left arm had been sore all morning, Nurses Hannah and Jean took a look at it. They had bad news. My arm was suffering symptoms of phlebitis which is the inflammation of a vein.
My veins were not designed to transfer super toxic chemicals around my body. As this stuff has been getting pumped into my body, it was getting slightly backed up in the entryway and causing a “sunburn” of sorts underneath my skin. Unfortunately, the only course of action was to do a FIFTH IV IN FIVE DAYS.
This is one of my most hated things that I’ve had to do. I’m really glad Joanna was here to coach me through it because as she saw I was getting more stressed, she told me to wiggle my toes like she tells her dental patients and it actually worked to relieve some of the pain as the IV team was doing their thing.
The last few days I’ve been arguing with my parents on allowing the staff to install a port in my upper chest which will help with chemotherapy application and blood tests. The risks are that this is a significant surgery and the line which leads into the heart could become infected.
The struggle is that THEY are not the ones being relentlessly poked every single day and I am. I know that they’re coming from a good place but I feel like the nurses also better versed in this area. Because Dr. Costello recommended against it from the very beginning, my parents agree with his assessment. I’m hoping the news of my 5 IV implants will reach him before I leave tomorrow and it will be enough to change my parent’s mind because THIS REALLY HURTS!
I’m really thankful that I told the nurses that I wanted to stay an extra night to get discharged on Monday morning. We started at 3pm and didn’t finish until about 8pm. If I had agreed to leaving tonight, we would have been rushing discharge paperwork, post chemo education, and packing up the room. After all of that, it would probably be 9:30 pm and my family would have had to drive the hour and a half north to the cities while my dad and I would have a literal pissing match since with his prostate, he’s peeing every 15 min and I’m peeing every 20 after doing chemo. We’re NOT carrying empty milk jugs in the car. So it was best to schedule things to leave tomorrow morning at a slower pace.
So that’s it! I am done with my first week of chemotherapy. I honestly wouldn’t have expected to start feeling better so quickly. This is all thanks to the amazing, caring, and empathetic staff at Mayo Clinic Station 44. While I still have 2 more sessions to finish this round for the next 2 weeks, I feel that I’m doing pretty good with my eating and energy with all things considered. I expect a lot of new and unexpected changes to happen over the next few days/weeks so expect me to document them here. Overall, it’s been a pretty good week with lots of learning and healing!
Wow! You are amazing, Andrew! I’ve been following your treatment journey and feel like I am in it. Thank you for your clear mind even when the body is really sick, that you still be able to write everything in details for us to follow and learn.
I am very happy that the first round of chemo has worked well with you. Take it easy when you go home. I will com to visit you with good food.
Aw thank you! I’m looking forward to it
Andrew,
I just wanted you to know that someone is praying for you that understands your IV journey. It’s not fun. I had a nurse that encouraged me to “Go to my happy place “ while getting a new IV. Your happy place is your favorite place on earth. You can go there in your mind, anytime. It did help me. Maybe that technique will help you if for some reason the wiggling of the toes becomes ineffective. God bless you.
Thanks for the reminder, my happy place is all the places I’ve traveled to and have blogged about on this site 🙂
It’s great that you have been receiving so much support and caring from Joanna, coworkers and health-care professionals.
It IS a rude, blunt education, isn’t it? >> I would defer to the doc about the port but a number of the cancer patients in my forum really prefer it for the reasons you mention. >>> One suggestion for what sounds like hand/foot syndrome is Udder Creme (perhaps Udderly Smooth) is recommended by the chemo nurses. >>> Best wishes for continued good progress.
Truly inspired to read you! Thank you for the smiles on the pics!!
You tell your story so honestly and in a language, anyone can understand. Thank you for sharing Andrew, it can’t be easy to find the energy to do so – but it’s truly a gift. Wishing you more gripping sensations, thus more shrinking. – Sara