Good morning friends. I’m starting this blog at the beginning of my chemo day and figured I could take you through my day. They’ve restricted all visitors because of COVID so only patients and staff are allowed in the building. (It has always been that way on the chemo floor but I was able to have one person at my oncologist’s appointment in the past.)
8am: At the moment I’m waiting for my labs. Usually around this time I start the day off with prayer and check my work email. This morning I prayed that God uses this chemo to eradicate all of the cancer and that my body will handle it. I pray for the success of this clinical trial. I pray I can get on the maintenance therapy. I pray to be here on earth and live a long full life. I pray for a cure. This morning I also prayed for Luke Letlow’s family. I didn’t know him personally, but one of my best friends did. She called last night and was so upset. My heart broke for her. You guys, he was 41 and healthy. He went to the hospital on December 19th with Covid and passed away yesterday. COVID is no joke…..and it’s not over. I’m hopeful there is an end in sight. Truly.
I PROMISE this isn’t a soap box and I won’t be long. However, I hear so many people dismissing what’s going on. I understand that it probably isn’t too scary for a healthy young person to think about possibly getting COVID. I just hope people will realize it can happen to anyone….and you never know who will have a bad outcome. As someone on chemotherapy (and having a compromised immune system) it’s a scary thing. Every day is scary. When I see a person in public with their damn nose hanging out of their mask (or God forbid not wearing a mask at all)…it’s scary.
Hold on….time for my labs…I’ll be back!💜
Okay. Labs are done. They take quite a bit of blood from me to check my labs but they also take blood to study for the clinical trial.
10am: Finished with my doctor’s appointment and EKG. Now I’m in the waiting room for treatment. I found out today that I have scans in 3 weeks (on January 19th)! Let’s start praying now, shall we?😊 Ideally, there will be more improvement on the scans and my “target” liver lesion will be smaller (or hey, if God just wants to take it away totally…..by all means!) The NP today said they always hope for improvement but they would be okay with “stable”. (On my last set of scans the “target” liver lesion went from 21mm to 9mm!!! That’s great progress and I want to keep that progress going!) The mets in my spine looked about the same on the scans (it’s hard to tell if they are healing or active on the bone scan sometimes). I don’t have a target lesions in my lungs since the spots are too small to measure as target lesions. Since I’ve been able to handle the chemo so far they decided not to dose reduce the cisplatin today. Which means I’ve been on the full dose the whole time….for all 6 cycles thus far. Yay! (Full disclosure, I’m not sure I’m painting an accurate picture here of “handling” the chemo.) This treatment is not roses and sunshine. It’s hard. The nausea is terrible and there are times I’m throwing up uncontrollably. Mark has been by my side the last 2 cycles holding my hair back and being there for me every step of the way. He’s so amazing.)
Whatever the treatment entails, I don’t care as long as it’s working💜
Also, shout out to my mom, Anna, Becky, Sarah, Meg, and Eric for coming to KC and helping take care of me. All of the friends who came to KC quarantined beforehand and had COVID tests immediately prior. I have the best friends in the world. I also had some quick (and safe) visits from Brandon and Meeta earlier this fall❤️
Anyhoo, I will have to wait until after my scans to determine the next step. It could be more chemo, or it could be the “maintenance” part of the trial. In case you’re just tuning in, here are the chemo drugs I’m on.
Cycles 1-6 (each cycle is 21 days long and I have 3 chemo treatments per cycle on days 1, 2, and 9 with a Nulasta shot on day 10)
1. Opdivo- immunotherapy (Day 1)
2. Cisplatin- (Day 1) the nasty chemo that causes most of the nausea and vomiting. This also is what causes my White Blood Cell Counts to be low
3. Romidespin (Day 2 and Day 9) This is considered a chemo and can cause some nausea and “can” cause low counts but doesn’t always.
1. Opdivo (Day 1)
2. Romidespin (Day 1 and Day 9)
God willing, at some point I can be on the “maintenance” chemo AND most importantly the maintenance will WORK for me. It has worked for a few people on the trial. Since I’m the last participant in the trial (#100), they will start evaluating the trial data fairly soon. Maybe in a month or two.
11am: I’m in treatment and started on my pre-meds and fluids. I have to get two hours of fluids before and after the cisplatin because it’s so hard on your kidneys. I also come back to the cancer center for a couple of days after treatment for fluids.
Sidenote: I don’t know what has gotten into me the last few days but on the way up to treatment I just had to ask a guy IN THE CANCER CENTER to put a mask on. I mean….really dude? I don’t want to be the mask police or the damn hall monitor. I have better things to do with my time…..but I couldn’t resist today. Suffice it to say, I’m not winning any popularity contests as of late. #woops
Changing topics, a few people have mentioned that they’ve missed reading my blogs lately (that is so sweet and encouraging, thank you). To be honest it has been awhile since I’ve blogged because I’ve been so sad about my kitty Geneva passing away on December 4th. (If you follow me on Instagram (Username: HollyHollisStars), this isn’t new news). I loved her SO much. She was my loyal friend for 13 years. She never left my side when I was sick. In retrospect, the pandemic was a blessing in one way because I was with Geneva nonstop the last 5 months. I don’t want to get into what happened. It’s too hard to talk about and I don’t want to cry in public today (we all need daily #goals). Just know that she had the BEST medical care Kansas City had to offer (the ICU hospital we took her to was so impressive). Her little body just gave out. It was her time. I like to think she’s a furry miniature angel watching over me.
Soooooo let’s add yet another trauma in my 2020 book. Good grief! (That being said, I’m still believing that God is in the process of turning all of this tragedy into testimony🙏). I understand the pandemic isn’t going to magically end the moment 2021 is here. But, I have hope that at some point in 2021 life could be a little more normal. I found out today that as of now, there isn’t data regarding the COVID vaccine and chemo patients, so my oncologist does not want me to get the vaccine as of now. Can I ask just ONE more favor? If you are healthy and able to get the vaccine, please consider it. Okay, my Covid rant is over. Did you make it to the end of this? Bless you!
12pm: I took a break from blogging to answer some work calls and emails. It helps me so much to keep my work going during the week. I’ve been with the same company for 12 years and they really are like family. I love my job. Working keeps me normal and reminds me that I’m going to beat this and get this cancer under control. Speak it out loud and into God’s ears, right? 🙂
On a lighter note, Mark and I decided to get away for a few days during Christmas and drove to Breckenridge. We stopped in Denver for a night to see my friend Emily and her boyfriend Paul (I’ve known Emily since…..5th? 6th grade?). Anyway, Emily surprised us with a room at a pretty boutique hotel overlooking union station. (She works from home and her and Paul are SUPER careful so I felt comfortable seeing them.) They brought over dinner and we sat across the room from each other and had the best time. I had been missing home so much and seeing her felt like home💜 in fact, we were having so much fun, we don’t have any good pics to speak of….unless you count this one Emily took haha.
1pm update: I’m now getting the Cisplatin infusion.
Anyway, The rest of our trip to Breckenridge was relaxing. We kept to ourselves, took a few long walks, watched movies by the fire, and took in the gorgeous scenery. We cooked in the condo so we didn’t have to go out to eat. The restaurants were crowded and we didn’t feel comfortable going out to eat in that setting. Normally we would ski, but chemo makes me so physically fatigued I didn’t think it would be as enjoyable for me. Hey, there’s always next year! We did go to the top of the mountain one day and went tubing. It was fun 🙂 The tubing videos are trapped on my GoPro at the moment, but I plan to download them this week.
All and all, I loved spending time with Mark. He’s often the unsung hero in this battle. I know I’m very lucky to have a husband that is so emotionally intelligent AND present for me. He listens. He gives me encouragement when I’m sad…and he also lets me cry when I need to. Lately the tears “seem” to happen because I’m homesick. It dawned on me that I’ve taken my life in Baton Rouge for granted before the pandemic. I took for granted seeing my friends whenever I wanted to…sleeping in my own bed…driving around the corner to my favorite green juice shop. Driving to my office. All of the little daily things. However, Mark gave me a well timed reminder last night that God is always with us and doesn’t matter where we are. As long as we are together. That is home♥️
This was a much longer blog than I had planned on, but I wrote it quickly for a change (which means you’ll have to pardon the typos). My actual infusions on day 1 are around 6 hours, so I should finish around 5pm today.
P.S. Tomorrow is NYE and Mark’s birthday (unfortunately I have chemo tomorrow -so we’ll be keeping the birthday celebration very low key).
P.S.S. If you’re one of the sweet people that sent me goodies from my Amazon List thank you thank you💜 It still blows my mind how generous people are and moreover, who actually reads my blog. I feel so supported. You guys (along with my faith) help keep me going on hard days. Thank you🙏
Until next time,
⭐️Holly Hollis Stars ⭐️