Where do I even begin? I’ve been putting off blogging because I didn’t know what to say. But, I’ve had a chance to catch my breath and have the “moments” I needed. Grief, anger, disbelief….just to name a few. Now, I feel like I can at least talk (or write) about it. Sometimes it’s hard to blog about something that’s painful and fresh. Anyway, this blog isn’t about perfect grammar….or perfect anything for that matter. I just need to get it out, so we can move forward.
On Wednesday August 19, 2020 I went in for my 3 month scan. It was a chest CT with contrast. One of my doctors called after the scan and explained that there were spots on my liver that weren’t there in May. (I didn’t realize that a CT scan of your chest catches the top part of your liver but it does make sense in retrospect). He ordered an immediate MRI of my Abdomen and said he was worried. I cried through the entire liver MRI except for the parts when I had to hold my breath (the poor people in that room didn’t know what to do with me). Mark was with me. He looked like he was in a daze. I felt so bad for putting him through this again. The worry and fear that come with scans. At that point I was praying there was SOME other explanation for the spots and that they weren’t cancer. When the doctor called again later that day I could hear the hesitation in his voice when I said hello. There was about a 3 second pause and in those few seconds I knew. Before I could say anything he said “Holly, it’s not good”. It sounds dramatic but I dropped to the floor in that moment. It felt like someone had knocked the wind out of me. The cancer was back, in my liver in 8 places. He was surprised. We were all surprised.
The next step would be a liver biopsy to confirm what the doctors strongly suspected.
I knew what his words meant, I didn’t have to ask. As of now, there is no cure for what I have. For the last 10 months I’ve been off of chemo and living……REALLY living guys. Of course there was always this fear in the back of my mind. But in a weird way, now that it has happened, I feel a strange calm about it. I don’t have to worry and wonder if it’s coming back. I don’t have to ask “why me?” There isn’t an answer for that. Like I’ve said in the past, the only relevant question at THIS point is “okay, what now?” (I’m sure this blog isn’t going to be perfectly organized by any means…..but for those asking, a liver transplant is not an option because the cancer didn’t originate in my liver.) Moreover, taking out certain sections of the liver is usually only an option when the cancer is in one or two little places. Mine is all over. We need to start with “systemic” therapy first. Which means chemo. So, as of now, we are actively in the process of getting our plan in place. I’m meeting with a doctor in a few hours about the last spot in a particular clinical trial. I don’t want to go into the details because if I don’t get in (God forbid) all of this information will be irrelevant. Stay tuned…..
Update on Treatment: Saturday September 5, 2020
I’m back! The good news is that yesterday, I was officially accepted into a Triple Negative Breast Cancer clinical trial. It’s with KU (University of Kansas). The oncologist and facility where I’ll be getting treatment is in Westwood, Kansas (it’s all near the Kansas City, Missouri metro area). I’ll go through the most common questions I’ve been getting lately 🙂
Q: When do you start? A: My first day of chemo should be on September 16th but I may need to be there a day or two early to get a hearing test (apparently one of the chemo drugs I’m getting can cause literal ringing of your ears- splendid!) 😉
Q: What’s the plan for your chemo? A: For this clinical trial a chemo cycle for me is 21 days. The plan is to get 4-6 “cycles” (depending on how things go) of part 1 of the clinical trial regimen. If that is successful, I will hopefully switch to the “maintenance” part of the trial. The maintenance part of the trial is also in 21 day cycles which I’ll discuss later.
Q: When does this treatment end? A: I will be on this trial as long as the treatment is working for me and I’m not having disease progression. We are hoping this will be a long term solution but there aren’t a definite answers in that department. Prayers that this is my magic cocktail!
Q: Has this trial cured anyone? A: There have been some patients with liver mets that have done well on the treatment…so that’s encouraging! (Meaning they were able to be on the “maintenance” treatment for a year or so before disease progression and needing to go to a new line of treatment). The clinical trial is still in progress so they can’t release exact numbers or results. I do know that there are about 50 participants total over the course of the trial which has been going on for 4 years. And seriously, I got the LAST spot. For real. The doctor and nurses all commented that I have the last spot in the trial and they are no longer enrolling now that I’ve been accepted. Wow. I like to think that’s God’s way of opening a door for me 🙂 What is the old saying about closing a door but opening a window? You get the idea. I believe one patient with liver mets is classified as being to “in remission”. That patient had one of the BRACA genetic mutations (and I do not). Even so, they said they don’t know if the genetic mutation had anything to do with it. Who knows, maybe after me, there will be TWO patients in remission 🙂
Q: How soon will you know if the new chemo cocktail is working? A: I get scanned 9 weeks after I begin chemo. At first I freaked out hearing 9 weeks because that seems like a long time. The doctor assured me they would keep a close eye on my labs and we will be on the lookout for any new pain or signs of disease progression. The doctor explained that with the immunotherapy component of the trial, it takes time for the immune system to ramp up and attack the cancer cells.
Q: Can you tell me more about the clinical trial? A: Here is the general plan:
Initial 4-6 “cycles” – 21 days long
Cycle 1 Day 1: Cisplatin (chemo) and Opdivo (immunotherapy)- both are in IV form. I hear the cisplatin is rough. I’ve had carboplatin chemo in the past and it wasn’t fun.
Cycle 1, Day 2: Romidespin (they categorize this as a chemo as well although it’s different than anything I’ve had in the past).
Cycle 1, Day 9: More Romidespin
Cycle 1 Day 10: Nulasta injection (because chemo makes your immunity/white blood cell count very low)
Cycle 1, Day 11-21: Rest!
Once the initial 4-6 cycles are over I can switch to the maintenance treatment which is typically better tolerated since you stop getting the cisplatin infusion. (I sound like a broken record but if you have time please pray this works for me💜).
Q: How long does chemo take? The doctors said to plan on a full day (around 6-12 hours) every time I’m there for treatment because the infusions take so long (woof!). For example, the day I get Cisplatin (about an hour infusion) I also get FOUR hours of IV fluids because the Cisplatin is so harsh. I was also told that the Romidespin is a long infusion by itself as well (about 4 hours). Oh boy.
Q: Can you have anyone with you during chemo? A: Nope. Not during Rona unfortunately. (Stupid Rona). After the world pandemic ends, I’ll be able to have someone with me during chemo. Let’s hope that is sooner rather than later 🙂 Side note: I’m not someone that likes to discuss heated topics on my blog (it’s just not my thing and not something I enjoy….personal preference). I will say though, if you know someone who doesn’t think wearing a mask in public is important…..good grief…..maybe they will wear a mask for me? It’s hard to hear someone complain about “not being able to breathe with a mask on”. I get it, it sucks…..but guess what sucks more? Chemo. So on that note, wearing a mask (over your mouth AND NOSE) when you are supposed to would be greatly appreciated💜 Please and thank you 💜
Q: Will you lose your hair? A: a lot of people on the trial lost so much hair that they ended up shaving their head. There were a few that thinned, but kept some hair. So the jury is still out for me, but if I lose my hair…..it is what it is! All I care about is being here. Let’s be honest, the stage my hair is at currently isn’t ammmmmazing anyway 😉 I’m half curly and half straight like a labradoodle! My preference is to keep my hair obvi, but it’s not under my control. (Insert 🎶 Frozen’s Let it Go)….you’re welcome, it’s stuck in your head too now. 😇 *One of my BEST friends (Elizabeth) and her fabulous mom (Cherie) already ordered me a gorgeous emerald scarf for my head in case I do lose my hair. (Because Chemo, but #fashion).
Q: So you aren’t doing cold caps? A: I had decided already I wasn’t going to do those again. The Penguin Cold Caps worked great for me (even though I was not supposed to keep my hair on the Red Devil Chemo, I did….so props to them….and my cold cap crew!). That being said- I’m tired….and I’m ready to just embrace the baldness if that’s what’s in store. I’m glad I decided this beforehand because I wouldn’t be able to have my cold cap crew with me out of town, and during Rona anyway.
Q: Where will you be getting treatment? A: With this clinical trial I’m required to have all of my treatments at the KU cancer center in Westwood, KS. There are discussions about letting me get the Nulasta shot at home (but only after the first cycle). The doctor was firm that I need to be close by during the first cycle to manage my symptoms and see what kind of care schedule I’ll need. We’ll have to play it by ear…..but I’m hoping to come home between days 10-21 of the second cycle before I go back.
Q: Have you had any more scans? A: Yes, ….one more curve ball: I had scans yesterday afternoon at KU (a CT of my chest and abdomen and a full body bone scan). I got a call from the NP right as they were closing to let me know the results. My bone scan looked normal (yay for small victories!) and I still have the same 8 spots on my liver. One spot does look bigger but that could be due to the biopsy (aka the prison yard shanking). The only issue is that the radiologist’s report said that there is a splattering of small spots all over my lungs that “could be scar tissue or further evidence of metastasis”. I brought the disks of my scans from two weeks ago with me to Kansas- but I was so upset and nervous I forgot to give them to the doctor. I’m usually on top of things. I had a whole list of questions to ask the doctor and I didn’t make a note to give her my scan disks. Grrrrrrr. So anyway, I don’t think they were able to compare yesterday’s CT scan to my previous scan 2 weeks ago. Another prayer request, let’s hope this sh*t is scar tissue. The scans on my CT a couple of weeks ago made no mention of these spots- so it’s either nothing……or really scary that I now have spots in a matter of two weeks. I don’t have a copy of the radiologist’s report yet- and I’m a new patient so I don’t have an ID number yet to log into my patient portal to look up the results. So, we’ll just have to wait. NATURALLY this news comes on Friday afternoon before a long weekend 😉 Either way, regardless of the spots, I’m still in the trial and my treatment plan won’t change, so that’s positive!
Here’s a pic right before my bone scan yesterday: My port was sore from the surgery Wednesday so they used an IV, but in the future I can use my port for scans if I want to. #fancy
For the people reading this, all I can say is thank you so much for your continued support and love. It means more to us than you know. We are certainly heartbroken at times…..but other times I keep telling myself that it isn’t over yet….I could fight for years and someone could find a cure in the meantime. Nothing is impossible with God’s guiding hand and modern medicine. (Not to mention the support and love from our friends and families).
The only thing I can say for sure is that we will NOT go down without a fight. Cancer is public enemy #1 and it’s being SUPER rude at the moment 😉
For me, the toughest part is waiting for my treatment plan to get started. But, it’s a good exercise in faith and patience. (I also have a LOT to do before then). It also reminds me that there is SO much in the world we can’t control- even though (as humans) want to try. It gives me time to reflect on how many things I have to be grateful for. I miss my dad every day…but I’m grateful my mom is still here and healthy. I’m grateful she’ll be able to be there for me during this process. I’m also reminded that my friends were put in my life for a reason. They have been so supportive and crystal clear that they are going to be fighting with me every step of the way. I also know Mark was put in my life for a reason. He has been strong, positive, and everything I need. I couldn’t ask for a better partner. If any of his friends and family are reading this…..you would be so proud of how he’s supported me behind the scenes without accolades or anyone watching. (One of my favorite books, Relentless would describe Mark as a “cleaner”). If you read the book you’ll understand 😉 In fact, before the proverbial sh*t hit the fan with my last scans, I was working on a blog about my book recommendations during tough times times and cancer treatment. I’m hoping to finish that blog soon. I know having my work and the blog will help keep my mind occupied as we start getting in the weeds of treatment. So, I hope you guys will keep reading 🙂 Quick updates will be on my public Instagram (username HollyHollisStars).
Some of you may remember that I took out my chemo port awhile back (my veins are weird and I had some swelling in my arm). So I had another one put in. I had a minor panic attack when they started putting the surgical sheet over my face when I wasn’t asleep yet- but fortunately whatever they gave me kicked in moments later.
One last thing- one of my dearest friends called in a favor and surprised me with this video after my scans yesterday. I’m SUCH a huge gymnastics fan/nerd (if you know me….it’s not surprising that I literally cried when I saw this video). I’m am so lucky I have so many incredible people in my corner willing to do whatever they can to make this experience easier or put a smile on my face💜
Until next time…….thanks for reading and keep the prayers coming!💜
⭐️Holly Hollis Stars⭐️