I’ve discovered that the last two days that I’ve been on Toradal, my body starts out normal when I wake up in the morning but I slowly age into a 60 year old by the end of the day as it wears out.
I’ve been fortunate that the anti-inflammatory medication has worked for me and I can wake up relatively pain free and without need to rely on pain killers to go about my day. By noon, I expect my body to hit a fever point. So much so that my dad and I made it into a betting game. Yesterday I said 100.5f, he said 101f, thermometer showed 102.9f 🙁
For that fever, they give me Tylenol and I wait about 2 hours for my body temperature to return to around 99f. During that period, my body goes through 10 years of wear and tear. My resting heartrate has been minimum 118bpm and my lung capacity is at 42% so I’m breathing faster and shorter breaths so it’s exhausting just to lay here and wait.
Around 4 or 5pm my body temp will spike again. Yesterday I hit a personal best at 103f. Again, I lay there tired for several hours waiting for the Tylenol to do its thing. I play “horrible hospital food roulette” at 6 and take a nap for about an hour in the evening.
Last night I woke up at 8 in the same pain that I was used to. Arms hurting, tumor throbbing, and my right side feeling like I got stabbed with a knife. I needed help from my dad to sit up and to walk to the bathroom because I was so weak.
Before bed at 11, Nurse Jody will give me a shot of Toradol into my IV and I repeat the same cycle the next day hoping that I don’t hit any more fevers.
I grew up loving comic book super heroes and am reminded of Ra’s al Ghoul, a centuries old supervillian in the Batman series.
Ra’s Al Ghoul is aided in his quest by the Lazarus Pits, reservoirs of rejuvenating chemicals that restore the dead and dying to life; these pits have granted him a lifespan of several centuries
I can feel my body withering away right now. Nurse Jody told me that one day laying in a hospital bed requires 3 days in the real world to recover. With my in patient chemo and this, I’ve spent 9 days in a hospital bed.
I enjoy looking at progress pics, I guess for now I’ll have regress pics to share.
June 25
July 2 – 1 week later
I was telling Nurse Ryan that if I feel this bad already, I can’t imagine how the older patients on the rest of the oncology floor are dealing. At least I have 5-6 friends to text at any given time and I have a whole group of people I could call to come visit with me to pass the time.
He said that I’m the youngest patient here right now by a lot. Some cancer patients don’t have any friends or family so they just sit in their rooms watching tv waiting for their treatments to go along. It’s really sad and it has made him reassess what’s important in life.
Matt reached out to me a few days ago on Reddit to tell me his Germ Cell Tumor story and I’d like to share it:
It basically boiled down to a type of testicular cancer. A “few” types I guess being the mixed. No names or types of cancer were told to me. Found a painful lump on ol’righty in May or June of 16’. Due to insurance and a lack there of, I wasn’t able to see a doc until January of 17’. Had my right testicle removed in February 17’, chemo from April though June, 9 weeks of cisplatin, bleomicin and etopicide, 3 3 week rotations. During the time the cancer moved to some lymph nodes on my abdomen, had surgery to remove those, 22 in all in October. Been a fucking ride.
I told my dad about Matt and how I almost feel guilty that I’ve been blessed with just my tumor being localized in my chest. I don’t want to say that God favored me over all the other people that had it “worse” but it’s just hard to understand why some people have to suffer more than others.
Dad said that he went over my discharge paperwork from Mayo the other day and Dr. Costello wrote that based on the CT scans. My tumor was pressing up against my heart in a way where I was risking cardiac arrest within days if they did not admit me into the hospital last Tuesday. If my heart did stop, there wouldn’t have been a way to jump start it with Derek in the way. He said that God blessed me with a second chance because it was pure “coincidence” that I had an appointment at the Mayo clinic on Tuesday and that’s when I got really sick. Therefore I should use the opportunity to glorify God.
I was doing my small devotional time this morning and read this.
Peter spoke to the followers of Jesus scattered throughout Asia Minor. He encouraged them to demonstrate their faith in Christ in the society where they lived. Even as they faced threats and persecution, Peter told them not to be afraid, “But in your hearts revere Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect” (1 Peter 3:15).
Since the beginning of this year, I’ve prayed that God shine his light through me not in a preachy way but in a way where others know that I’m a genuine person who is a Christ follower. I hope I can do that with this blog without being in your face about it.
Ok I’m done being all somber and introspective.
I was laying in bed in the mid afternoon when a nursing assistant came to check my vitals. He said “Uhh do you want a smaller gown? It looks like you’re drowning in the one you’re in. Just so you know, the size you’re wearing is for our bariatric (obese) patients”
I told him that I was planning on meeting Peter Pan later that night.
I sweat so badly yesterday morning that the tape holding my IV started getting loose. The nurse gave me this fishnet stocking thing to hold it in place because if she gave me more tape, I’d just be waxing more arm hair off. As the day went on, my IV started getting more sore and irritated, I thought I used the fishnet wrong but it turns out that IVs has at most, 4 day lifespan. It hurt to just flush saline in it. While I didn’t want ANOTHER IV stabbed into me, this one was too far up the bend in my arm and I was having difficulty using my phone, brushing my teeth, and feeding myself.
They called the IV team in who did a great job with minimal pain.
If my body can stop having fevers today, I can go home tomorrow, Tuesday. If not, the doctors are going to have to work with my team at Mayo since I have another chemo booster shot on Thursday afternoon.
Hey there Andrew. I’m Ken’s mom. I’m so sorry to hear about your trouble with IV’s. They really suck! Ken also had issues with phlebitis and clots in his veins at IV sights. He never received a port for his Gemzar infusions, his onco decided not to based on his treatment. He also has been taking Capecitabine orally, which causes major nausea and hand/foot syndrome. He’s been suffering from side effects and your “old man” description sounds eerily familiar. Unimaginable pain and exhaustion, I’m sorry.
Before his surgery/liver resection, he experienced night sweats and pain. His tumor was pressing up against his diaphragm, and he also developed an uncontrollable cough and they thought it might have metastasized to the lungs, as often cholangiocarcinoma does, but scans have showed negative. He was diagnosed Jan 2, Stage 3b cholangiocarcinoma and today, 6 mos later to the day, he has 4 weeks to go to finish his adjuvant chemo/radiation treatment. He doesn’t think he can make it one more day, but I know he can. I don’t live in his achy, tired, nauseous, miserable body… being poisoned daily, but I have to have hope and be his cheerleader and more importantly his interceder. As his mother it literally kills me inside to know that he and you are suffering and struggling through this (hug your mom tight, and tell her I’m praying for her too!). I’m not boisterous or outgoing, I’m quiet and timid, I try my best to encourage and lift him up. I don’t share my worries and fears with him. I take those to God and pray for him almost without ceasing, petitioning God for comfort, peace, strength and joy. Yesterday during our worship in church(it was powerful!), we prayed for those needing healing, and I was sure to lift you up in my prayers too! I hope you don’t think I’m crazy, but I received a message from God yesterday and shared it with Ken and feel led to share it with you; “I am not finished yet, I will complete my victory through you. I am with you. I am here.” He knows your pain and suffering, and He is with you every step of the way. There is HOPE!!
Thank you for sharing, and allowing me to share <3