The Waiting Game

Hi friends! I wanted to give everyone an update on the latest. This week I was scheduled to have chemo on Wednesday (on the maintenance regimen I’m scheduled to have chemo on day 1 and day 8 of the 21 day cycle).

I can’t wait for the day when I can have a visitor with me at chemo again!

I wasn’t worried about not being able to get treatment this week because the maintenance chemo isn’t supposed to be as hard on your white blood cell counts (vs. the cisplatin chemo that I had 6 rounds of). I was surprised when my ANC on Wednesday was only 600. Pardon me? The plan at that point was for me to stay in Kansas City a few more days and see if my ANC would go up naturally so I could have chemo on Friday.

By the way, “ANC” stands for absolute neutrophil count…I use ANC and white blood cell count interchangeably….but truthfully I’m not sure what the exact difference is between the two. To be fair, the doctors seem to use them interchangeably as well? Anyway, from what I understand, chemo kills cancer cells…..but it also kills the good white blood cells too (having an immune system is a pretty big deal for a lot of reasons apparently). If I’ve explained this before bear with me. A normal person (without a compromised immune system) is around 11-14 (or 11,000 to 14,000). In order for me to safely get chemo, my ANC needs to be at 1000 or 1.0.

Anyway, the doctors were hoping my body would make more white blood cells by Friday, but unfortunately that wasn’t the case. I was definitely disappointed. When they took my labs, my ANC was still at 600 (or 0.6). I’ve asked multiple top level oncologists if I’m doing something wrong or if there is ANYTHING I can do to help my body get back on track. They’ve all kind of chuckled at the question and assured me that I’m not doing anything wrong and no, there is nothing I can do to make my bone marrow produce more white blood cells. (I’m just repeating what they tell me…..I don’t understand it, but it is what it is.)

They gave me a Nulasta shot on Friday which helps my body produce more white blood cells. A lot of people have bone pain along with this shot because it’s messing with your bone marrow. I haven’t had too much bone pain after the shot in the past….until last night and today. Oh boy. My lower back and tailbone area were hurting all night so I didn’t sleep well. I can take Claritin to help with that….yes, Claritin (strange right?). In the middle of the night when this started I reached for the Claritin and the box said “non-drowsy”…..ummmm will that keep me awake? I chose not to take the Claritin last night and eventually fell asleep. Today I took it but it hasn’t helped too much. (It usually does). I just took another hoping for a little relief. (For the record I’ll take bone pain over nausea any day). Anyway, I spoke with the NP about the shot on Friday and she told me that the Nulasta shot is basically a band aid and they need my body to catch up naturally. I asked her if the other patients on the clinical trial were having issues with their ANC at this point and she told me no, not usually. (Oh, lovely!)

This is a prime example of why comparing yourself to others isn’t helpful or productive. I know this….and I know that God doesn’t want me comparing myself to other people. That’s something I continue to work on. There is a fine line between staying informed/advocating for your health….and comparing your progress to someone else. (I’ll digress a moment and note that outside of the cancer world, comparison is pretty much “unhelpful” 100% of the time.) This isn’t a new or groundbreaking idea by any means, but it’s so easy to look on social media and compare your job, your house, your kids (or lack thereof), your car, your body….(you name) it to someone else. There are plenty of comparison mind traps just waiting to happen. We are all guilty of comparison sometimes….it’s human nature. When I catch myself in that mindset thinking things like “Why is this happening to me? Why can’t my life be easy too?” I try to stop myself right there and just pray about it. God has a plan for me, a plan for a future and for me to prosper (that is a really comforting verse for me). Just because everyone doesn’t have to deal with Stage IV cancer doesn’t mean they don’t have challenges and heart break and set backs of their own. The world sees what is on the outside (and on Instagram😉), but God sees what is on our hearts. I remind myself that my life is wonderful in so many ways. I’m so thankful that I have people who care about me. I have a husband who loves me. Family. Friends. So many things to be grateful for. (The fact that people read this blog still amazes me honestly- another thing to be so thankful for…genuine support). I’ve said this before, but if it weren’t for my diagnosis I wouldn’t have been forced to examine my faith and really appreciate each day.

⬆️ That was a little bit of a detour from my update, but it was on my mind today.

ANYWAY, if you’re still reading, the NP said if my ANC “continues to be a problem” they would need to investigate why. Of course all KINDS of alarms were going off in my head when she said that…. “What do you mean? Why? What’s wrong!?” At that point she told me not to worry. She reminded me that my body has been through a lot. Cisplatin is a rough chemo drug and my body might just need a little more time to recover. I believe I’m the only person in the clinical trial who didn’t dose reduce the cisplatin chemo…..perhaps that is part of the issue? Who knows.

I do know my counts were not where they needed to be this week and yes, others on the trial did not have issues with their ANC counts on the maintenance chemo. However, my body is different and unique, and that’s okay. As my friend Elizabeth says, “my cells are singing a different song”. (I would like to gently remind my cells to *sing more white blood cells when they have some free time.) I’m just going to pray that my body can rebound. I believe it can. I just need a little more time. If anyone is looking for specific prayer requests in the upcoming days, I would love prayers that my ANC will be back up and behaving in a week and a half when it’s time for my next chemo. Please and thank you 🙂 My devotional yesterday talked about thanking God when you have disruptions to your routine because it helps us totally depend on God for our strength. Something for me to keep in mind.

I also want to clear up a misunderstanding from my last blog. I’m sure no one noticed, but in case you did….my target liver lesion measurement wasn’t correct when I first blogged about it. It’s not bad news, there was still improvement (yay!). I just had cm and mm confused. When I started the trial my target liver lesion was 2.1cm, then on the second set of scans it was 0.9cm, then on the most recent scans it was 0.7cm. I misunderstood the doctor and thought it was 0.7mm (which honestly would be too small to even see on a CT scan come to find out). The doctor probably said 7mm which is the same thing as 0.7cm and I didn’t hear her correctly. Like I said, it is improvement either way and we are so thankful and excited. The next big hurdle will be making sure the cancer doesn’t grow on the maintenance therapy now that I’m not on the harsh cisplatin chemo. I PRAY for that day and night. I know God can do this. It’s so scary to think about sometimes. Sometimes I just get overwhelmed and burst into tears (Mark is always there to comfort me and pray with me). I’ve said it before but this is what faith is all about, believing in what you can’t see. (As I’m writing this I’m tearing up….it’s emotional to think about and write about. Deep breath. I’m choosing to stay positive and hopeful!)☺️

In other news, trying to avoid THE RONA continues to be something Mark and I deal with every day, every moment. Since my immune system is so low, the LAST thing we need in our lives is RONA. Not only me, but small detail, Mark had a pulmonary embolism in June of 2020. Casual. Suffice it to say, he CERTAINLY doesn’t need to get it either. (See my post called Mr. and Mrs. Miracle for the deets on Mark’s ordeal if you missed it). (He is doing well for those asking!)

Anyway, I’m praying we can stay safe and that people will choose to get vaccinated when it is their turn. My dear friend Sarah lost her grandfather yesterday to COVID. (I was so happy I was able to meet him at her wedding. He was truly a remarkable man and led such a full life). It’s sad that the vaccine wasn’t available yet where he lived. Getting the vaccine will not only help the person receiving it, but it will help so many people who are vulnerable right now. It will help someone like me, someone like Mark, someone like your parents and grandparents.

On a lighter note, since my oncologist doesn’t want me in a gym right now, Mark and I have been taking bike rides in KC to get exercise and have really enjoyed it.

Kansas City has plenty of pretty neighborhoods to explore 🙂

I love feeling the sunshine and the wind on my face. (Well most of the time, it was 18 degrees the other day during our bike ride which was a tad cold for my taste). You might wonder why you can see the top of my helmet in the video below. That’s because I couldn’t feel my fingers and was trying to stop the video with my nose🤷🏻‍♀️❄️

A crisp 18 degree bike ride! Nothing to see here!

Either way, it’s such a nice break from the hospital and the house 🙂 I did discover recently that seat height REALLY makes a difference in the overall experience. Until a couple of days ago, my seat was apparently WAY too high and every time we stopped at a cross walk I would awkwardly teeter and shuffle to try and get my feet to the ground while my husband watched with a puzzled look on his face….trying not to judge what was going on. I’m laughing as I type this because really I’m not describing it properly. Just trust me…..it was awkward. Mark eventually realized what the problem was and suggested I lower my seat. I’m not sure why didn’t think of that. (Oh wait, I do know why, because on my one Pelaton ride the instructor told me to adjust the seat to hip height.) Lies 😉

The new normal 😷

I think I’ve chattered on long enough. Thank you for reading this blog and following along with me. I’m thanking God in advance for the healing AND abundant white blood cells to come! I’ll check back in soon.

xo

⭐️ Holly Hollis Stars⭐️

6 thoughts on “The Waiting Game

  1. I absolutely love reading your blog updates. So well written. This one was funny – got me laughing several times. Your spirits seem strong. It really is remarkable how strong you are. Such an inspiration to us all. Keep fighting. Little Drew and I just got done praying for you. We love you and are thinking of you often. 🤍🤍🤍

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  2. Love you both. Praying that those white blood cells come like a waterfall! I picture pac man eating up all the bad stuff and the white cells in white t-shirts with big muscles!

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  3. Hang in there Holly!! We are Going to pray with the masses those levels are going to be what they should be when your body is ready for the next step! You have such a beautiful spirit and are inspiring so many with your courage and FAITH! And yes we want to know what you are thinking and your emotions. Love and Prayers, Mr. Kenny and Miss Ann

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