I’m sitting next to a fire pit while a fountain with a lion head runs by a vine-covered wall. It’s this little oasis in Hollywood a few blocks from the stars on the sidewalks. Our hotel was remodeled after old-school movie magic, and I have the honor of using J. Garland’s room for a few days. While it’s nowhere near as large and grand as the Sahara or the black pyramid in Vegas, it’s perfect for me.
My body is back on the upswing after the second round of chemo. I’ve been meticulously tracking any side effects and, so far, the pattern is continuing. Maybe later I’ll post a graph showing how they appear in a two-week cycle. For now, the fire feels nice, the fountain has a decent rhythm, and I want to hug whoever planned the black and white decor to go with all the green California vegetation.
Oscar’s asleep in the room. He hasn’t let me drive once the entire trip, but I’m going to insist I get to do a good chunk of the drive back to Ogden. I can’t blame him. My energy levels on the first weekend have been low. The idea of falling asleep at the wheel is maybe silly but still a mild instigator of anxiety. Since he let me take a few naps along the way, I’m fine with letting him snooze.
Why Hollywood? No, Capitol Records didn’t find the video of Ty and me doing “What Does The Fox Say” and offered to sign us. This trip was one of those big plans we made when I still had No Evidence of Disease. Death Cab For Cutie is doing a concert of their album “Transatlantacism” front to back tomorrow night. The Postal Service, Death Cab’s side project, will be playing their only album “Give Up” front to back in the same show. Nostalgia played a big part in why we wanted to go.
Those albums were frequently in play while I was trying to survive my first year in Phoenix, away from any family and friends. They were mellow like lo-fi is famous for today, but something I could sing to. They kept me grounded. I didn’t have access to my meds at the time.
Remember, in 2004 no longer being on my mom’s insurance meant major depressive disorder was a pre-existing condition. In those days I only needed one prescription, but a month’s supply was not affordable for a college student working at a Jiffy Lube. If I was dealing with cancer back then, it would have been game over because of the lack of insurance access, not due to treatment options.
End of rant, but you can see why these bands were part of my coping mechanisms. “Such Great Heights” had a flavor of rebellion and victory. “Expo ’86” was how it felt getting a daily dose of Lexapro to last a week. It’s about relationships ending for most people, but it’s a metaphor for survival to me.
This concert is one way I’m honoring the 19-year-old Stephanie who had good days some of the time and “spiraled” on day seven, who suffered through the hours until the next dose finally kicked in, who was at the mercy of new friends to keep a roof over her head… You get the idea. If you think I’m strong now and seem to be handling a cancer diagnosis unusually well, it’s because I’ve been through worse and had practice.
We weren’t sure if I’d be in any shape to take a long trip. If we didn’t have seats and it was standing view only, we would have canceled. Thankfully, the second two-week pattern matches the first, and I’ll likely be 100% in energy and 80% in strength. I’ll get to experience my husband and I, his ex-wife and mother of my stepsons, and her new husband enjoying a night out together, and not because the boys are there. It’s something I hoped would eventually happen when my relationship with Oscar got serious. I always wanted that for my family when I was a kid. I’m grateful to know she and Oscar are supportive of each other. He can use all the support in the world right now.
You’re probably annoyed that I STILL haven’t given an update on chemo treatment. I’ve been busy getting plans in place if Worst Case Scenario happens again. This vacation has forced me to sit and reflect for a moment since everything I need to work on is 700 miles away. Again, this outdoor lounge is very conducive.
Chemo treatments run in a two-week cycle. (See previous post details.) It’s different for everyone, so this is just how my body is handling it. (Has anyone made a video game showing what it’s like to deal with cancer? Difficulty levels and handicaps like no insurance to start a new game?)
Day One: We arrive to Huntsman an hour or two before I’m typically functional. I get my port accessed and my blood is tested to confirm my numbers are fine. I meet with someone on my oncology team to go over how I’m feeling, any side effects I’ve noticed, and a general Q and A. Based on our conversation we might include extras in my cocktail like IV therapy for dehydration issues, making the infusion easier to recover from. Then Oscar and I hang out in the infusion room for a few hours while all the IV bags finish dripping in.
Within the first hour of the main IV drip neuropathy begins. This affects my cold sensitivity in the nerves in my fingertips, toes, nose, and mouth. For now, it’s tolerable, but winter weather will complicate things. Some people describe a choking sensation if they touch or taste something too cold. For me, it’s like an electric shock.
The infusion room at Farmington had access to Netflix, but this one has some cable channels for entertainment. Usually, I watch Futurama or nature shows. I learned we can bring consoles and DVD players to connect to the TV. Game on.
I’ll grab a nap if I struggled to sleep the night before. Visitors are welcome. I appreciate them because they keep us distracted while we deal with the hospital environment. It’s a good environment, and the patients are taken care of, but it’s not a spa day.
My bladder decides it’s bored about an hour before the infusion is complete. Multiple bathroom trips usually indicate it’s almost time to head home. The only tricky part is making sure all the IV lines and cords don’t get tangled or fall as I cart them back and forth.
The final beeps notify the nurse I’m ready to go. I’m released from the IV drip lines and connected to a new Ood Ball. We make sure my bandage dressings are secure and note the time on the labels. I put on my fanny pack and the Ood Ball is placed carefully inside along with most of its line.
We pack up all our supplies and head out to the valet station. Once we’re back in the car, I pre-emptively take one of two kinds of anti-nausea meds. It’s the next of the infusion side effects and the one that scares me the most. Remember, it was the inability to keep down the chemo pills, food, or drinks that caused so much damage last time. I don’t even try to wait it out.
Once home, I might grab a nap or stay semi-productive. If I’m up for it, I have doctor’s orders to walk for 30 minutes daily. My energy and strength are usually about 90% once the Ood Ball is attached, and I prefer to take full advantage of it. Oscar often plays Magic with his friends Monday nights. Since I’m not working and have some time to kill, I like going with him. I’m not that great at the game, but hanging out while they play and talk trash is enough for me.
Bedtime means making sure I have button-up pajamas to secure the line to my port and don’t roll over in my sleep. The Ood Ball rests near my waist in the fanny pack, allowing me to sleep on my side like normal. If I roll over it could cause issues with the Ood Ball, so I have a new pregnancy pillow to prevent it. (Ads and YouTube have been sending me pregnancy advice ever since I researched it.) It’s also a good replacement for the body pillow Oscar wore out a year ago, so it was worth the investment.
One of the annoying side effects has been sleeping for no more than four hours at a time, even with the help of sleep aids like melatonin or ZQuil. I’m grateful for short-term disability and access to a leave of absence. I am in no physical or mental state to work the next morning.
Stay tuned for Day 2.
Team Hedgehog 