I think I procrastinate blogging sometimes because it forces me to address things I’m not ready to think about. That’s probably why it has taken me over a week to blog about my latest scan results. I’ll cut to the chase. It wasn’t the news we wanted to hear. All of my liver lesions doubled in size (at least) and there were “numerous” new lesions. This means I’m out of the Dallas trial and I’ll begin a new regimen of IV chemo tomorrow, October 25th. I keep telling myself that the fact I’m getting a new line of chemo means I’m still in the game. It’s crazy to think that after tomorrow, THIS is the list of drugs I’ve received: (feel free to scroll, but I get asked this question at LEAST once a week….so I’m putting the answer together in one place).
IV chemos: Carboplatin, Abraxane, Adriamycin, Cytoxan, Cisplatin, Taxol, and Gemzar.
Chemo pills: Xeloda
Immunotherapies: Keytruda, Opdivo
Experimental IV drugs: Romidespin
IV drugs for Bone Mets: Zometa, Xgeva
Shots: Zoladex (you can Google it)
Experimental drug to target FGFR2 gene amplification: TAS-120 trial.
Shots to boost white blood count: Nulasta, Nupagen……and there’s another that I’m going to be getting that I can’t remember the name of. I’ll make an post with this information(and some other things I’m always asked about) and put it in the FAQ drop down menu…. eventually 🙂
Anyway. Other than that, I don’t know how to describe how I feel about the scans, the new treatment, or losing my hair. I need some time to process everything. I know I’ll be going back to traditional IV chemo and getting a combination of Gemzar and Taxol. I know Taxol causes hair loss (for real this time). No, I’m not doing the cold caps. They did work for me in 2018 when hardly anyone was using them….but it’s a LOT of work and not worth it to me at this stage of the game. Again, the important thing I want to remember is that I AM still in the game and that God, my friends, and my family are still on my side. The fact that you’re even reading this blog right now means you care, and that isn’t lost on me. I promise to fill everyone in on the details soon, but in lieu of focusing on that today, I’d like to share a story that happened to me a few weeks ago.
The experience really made an impact on me, so I wrote the story down the day it happened and parts of the story as it was happening. For the sake of keeping it easy, I’m going to leave the tense as is. Hope you enjoy….or at least find it interesting.😉
I strolled up to the Airport counter today, ready to get my ticket and board my flight to Dallas. I checked the App and made sure the flight was on time. It was on time, all good. However, for some reason the App didn’t give me a boarding pass (odd). When I asked the gate agent to print my boarding pass he looked puzzled and said “I don’t see your name on this flight?” The feeling I had in that moment was like a “scary purse” moment when you think you’ve lost your purse for a split second. Can anyone else relate? Anyway, I opened the airline app, pointed to my flight and said “I’m on the 2:05pm to Dallas, here is the confirmation number.” As I was showing my phone to him, I saw the error clear as day. I had booked a flight FROM Dallas to Baton Rouge, instead from Baton Rouge to Dallas. Perfect.
For the record, that’s actually only happened to me one other time….and considering how much traveling I do for my medical reasons, I’m okay with the mistake. I thought to myself “okay, not a huge deal, I just need to get there by tomorrow morning.” They put me on standby for the flight that I should have booked originally (it was full). Either way, there was a flight out that evening I could take. Mark waited with me at the gate (knowing there was a good chance I wouldn’t get on the original flight.) As we were waiting, I noticed a pretty woman sitting across from me with a sweet looking older man who I could tell was her dad.
I noticed that he had his plane ticket in a clear bag around his neck and wondered why, but figured the purpose was just to make it easily accessible.
When I see an older man with his daughter I usually have to fight back a few tears. It’s almost impossible not to think about my Dad and wish he was still here. Then again, sometimes I’m glad he wasn’t here on earth when my cancer came back because it would have broken his heart. I silently told myself to get it together and smiled at both of them (under my mask). I leaned over and told Mark “the gate agent said not everyone has checked in on this flight yet, so maybe I’ll make it on time after all.” A few more minutes went by and the woman asked me “are you on standby?” I said “yes ma’am”. She then asked “are you traveling alone?” I was wondering where she was going with this line of questioning, but nevertheless I told her “Yes, I’m traveling alone. I’m on standby, but my husband is waiting with me.” (If my dad were reading this he’d immediately call me and say “GOOD GOD HOLLY DON’T EVER TELL SOMEONE YOU ARE TRAVELING ALONE! THEY COULD BE A PREDATOR!”) I’m chuckling as I type this because it’s so true (and if you knew Burl, you would know it’s true too). I used to joke with him and say “I could literally tell you anything I’m doing today and you’ll find a way to make it into a dangerous activity.” (He never argued with me when I said that. To illustrate the point further, one story stands out in my memory. It was a few years ago and my sister had just come home from running errands. She put her grocery bags down and turned on the living room light. As the room slowly illuminated, she screamed at the silhouette in front of her. She quickly realized it was my dad. He had been sitting in a rocking chair, in the dark, in the middle of the room….arms folded across his chest. Without hesitation he said “I can’t believe you didn’t lock your back door! Anyone could get in your house, look how easy it was for me!” She couldn’t help but laugh and asked what in the world he was doing at her house in the middle of the day. His response (with a straight face) was “surprise inspection.” (Oh boy🤦🏻♀️😅).
I digress. Back to the story. I left off where I’m in the airport talking to a stranger and explaining (to my dad’s horror) that I was traveling alone…in case you’ve forgotten.
The woman hesitated and said “I’m not sure if you’d be okay with this, but could I give you my seat?” Even more perplexed I responded “ummmm sure? But why would you do that?” She said “I’m actually just flying to Dallas and then right back home. My Dad has dementia and I’m worried about him getting there. He’s flying through Dallas to see my sister in California.” Then she asked “do you think you could take a look at this note and make sure he gets there safely? That way I could give you MY ticket since you’re on standby? Today is a tough day for me to fly so you’d be doing me a huge favor.” I looked over the note (below) and Mark looked over my shoulder. It was clear the man’s daughter had typed the note but there were also notecards obviously written by him as reminders. Mark immediately told her “oh you’ve asked the right person to do this….. my wife is very detail oriented.” (I thought to myself…well I am usually, except when I book the wrong flight.)😉
I told the woman I’d be glad to help and I would make sure he boarded his connecting flight to California. She looked shocked and big tears filled her eyes. I explained that I’ve had a LOT of people help me over the last few years during my various stages of cancer treatment, and I was happy I could help someone else for once. Her face changed and she said “wait…what’s your name again?” I told her and she said “I can’t believe this, but I sat next to you on a flight to Montana in 2019. You were going to a cancer retreat and shared your story with me. I always thought about you and wondered how you have been doing! Small world! You were in remission when we talked, how are you doing now?”
The sarcastic part of me immediately thought:
In case you watched the video (above) and are now concerned about my attitude or sanity, don’t be. That was a joke. This is a classic moment from the Real Housewives of New York. (I love Bravo…..unapologetically.)
Anyway, I told her I was okay but we were still in the process of finding the right treatment that would work for me. I watched the expression on her face change as she connected the dots and realized I wasn’t in remission anymore. She thanked me again and we boarded the plane. Her Dad (Sam) sat next to me and we introduced ourselves. I told him that I was going to make sure he got on his connecting flight and he nodded and said “I have two daughters. One daughter lives in California.” I smiled and talked to him about his daughters. He didn’t bring anything to read, and I noticed him looking at the safety manual for the plane in the seat pocket and could hear him sweetly humming a song. I don’t know why but the safety manual and the humming made me tear up. Clearly I’m sensitive when it comes to this subject.
During the short flight he told me several several times how proud he was of his daughters. After he started repeating the same story, things made more sense. Up until that point I was thinking “this man is totally fine.” However, I realized things weren’t totally fine. About 4 times he told me “Both my daughters are doctors, very smart. The younger one has a temper like me….but still very smart.” I laughed with him about his very smart (but spicy) younger daughter each time he told me like it was a fresh joke- because to him, it was. (Also, I can relate to being the youngest daughter- and a bit spicy.)
Over the years I’ve been told (a lot) that my dad would tell anyone who would listen how proud he was of his daughters and how his younger daughter was a lawyer. As I watched this sweet man beam with pride, it comforted me knowing that I made my dad proud. I never wondered about that. He told me all of the time. As the flight went on, I couldn’t help but notice some things about Sam that reminded me of my dad. The way he threw his head back when he laughed, the way he folded his hands in his lap…so many little things. Again, I had to make a concerted effort during this experience NOT to get emotional. (I had to tell myself “this is about getting this man to his daughter…not about you.”) I kept it together, but I still couldn’t shake the memory of the last time I saw my Dad in person, standing in the Baton Rouge airport where we had just left.
The plane landed and it was go time. I was on a mission and NOT going to screw this up. We got off the plane and there was an airport attendant with a wheelchair waiting for Sam. I told him that he could sit there and he adamantly told me “no I don’t need a wheelchair.” The note in his handwriting about accepting the wheelchair made a lot more sense at that point, because when I showed him the note, I saw recognition on his face and he happily sat down.
I walked with them to the other terminal, took a picture to send to his daughter (I would want the same thing) and sent Sam on his way.
If you’re wondering where I’m going with this story, I think it struck a cord with me for several reasons. One reason is because after my Dad took his own life my sister found paperwork in his truck showing that he had been to the doctor two days prior and had been diagnosed with Dementia. I had no idea. I knew he had been in for a checkup and he told me that everything was fine. No health concerns. I said are you sure? He said yes, “fit as a fiddle” and gave me his signature charming smile. He was in his apartment during that last facetime call as I quizzed him about his doctor’s appointment. He was smiling, happy, and making a glass of ice water. I talked about my day and about how I was wondering how long this whole “COVID” thing would last (this was March of 2020 keep in mind). He told me he loved me, I told him I loved him too, like we always did. The conversation didn’t feel out of the ordinary. I hung up knowing I’d FaceTime with him the following evening. I didn’t know at the time that would be our last conversation here on earth. But I’m glad the last thing I said to him was that I loved him.
Circling back, the experience at the airport made me think about what a privilege it is simply to be able to use your voice and communicate what you need to others. Not everyone has that luxury for a variety of reasons. I don’t think my dad ever wanted to get the point where he felt like he didn’t have a voice or a say in his own life. I know it would have tortured him if I was the one having to take care of him instead of the other way around. One thing that’s certain is that Dad wanted to know that I would be okay if he wasn’t around. Even though I’m a grown adult, he always reminded me that a parent’s desire to take care of their children never goes away. In that respect, I think he would be very pleased with the people in my life as he watches my cancer journey from above. Everyone needs those “in case of emergency break glass” kind of friends. (You know who you are.) When I think about what people have already done and would be willing to do for me, just to get me healthy again- it’s overwhelming. Sometimes I can’t believe how lucky I am.
Tomorrow morning’s chemo starts a new chapter in my marathon to find a cure. I’m going to focus on keeping my spirits up, finding joy wherever I can, and continuing to use my voice.
⭐️Holly Hollis Stars⭐️
For those that want to SEE what’s been going on lately, here are some highlights. (But- following me on Instagram is a much better way to see pictures.💜)