Around the same time as when I got the news that Lupus came back, I would normally be ramping up Halloween costumes for my family. The thought of going to the same intense levels as my previous award-winning pieces while dealing with chemo, and not knowing how chemo would affect me, was heartbreaking. I told the boys and Oscar they should reuse old pieces that would need minor adjustments or get something pre-made at the thrift shop. I’m so glad they talked me out of it.
On one of my good days, I gathered all the supplies from the thrift shop and craft store. I ordered the other pieces too complicated to make. Since the northern Utah weather was not going to cooperate there were some last-minute modifications to turn tropical-style characters snow-ready. Also, I checked the manga for the snow locations. They’re STILL wearing sandals and shorts. Couldn’t even find a version where they were wearing enough to keep us warm and be lore accurate. I really tried. You know the details in a costume mean a lot to me.
Two days before Halloween, and the day before the boys want to wear their costumes to school, we go into workshop mode. Neuropathy was still acting up and meant I couldn’t go outside in the cool air to spray paint the green and grey sash for Noah’s character. He caught on quick after a demonstration from me and did a wonderful job. Once It was dry I was able to use my sewing machine to quickly put it together, including three slots for his swords to fit. The hair and makeup were also easy for my hands to do this year, especially with the red wig I found at the thrift shop. My fingers were able to stitch on the red ribbons for two hats, but it was Oscar’s ingenuity that figured out the leather straps to keep them on if the wind acted up. Oscar also gets full credit for how good his bandana looks and cutting up a red button-up to become a vest with Charlie. The remaining pieces could almost work for a future costume.
The final results are definitely worthy to go on our family photos wall with the other Halloween costumes. I couldn’t be more proud of these three for how much they stepped up to continue one of our few family traditions in such a difficult situation.
The boys have been enjoying One Piece lately which is where the theme came from. For comparison:
Silas the pug has a wheelchair this year, so he got to join in for trick-or-treating around our block as Zero. Ruger didn’t handle having a bell on his collar, so no costumes for him. Instead, I found pajamas that match him.
I’m grateful that Halloween landed on a Tuesday and on the second week of my chemo cycle. I wish the weather had behaved more, and not just so our costumes could be more accurate. Any sooner, and we wouldn’t have been able to go to our usual houses because of all the hills. By the end of our trek, I was outwalking Oscar and the boys. Normally, Oscar and I hold back and let the kids take pieces of candy from a bucket left outside, but we got into our characters and acted like porch pirates this time.
I dressed up in part of my Trunks costume for the October 23rd infusion day aka Round 3. My hair’s gotten longer, and I don’t have a short blue wig available to complete the look, but nobody confused me for Bulma, so it worked.
I spent some time decorating the chemo fanny pack. Sticking with charms since they’re relatively easy to attach. They’re also noisy which means I can’t accidentally startle people anymore. It happens more than you’d think and I feel like a jerk every time. I need to sew on the chains. The safety pins aren’t quite cutting it.
Day Two: I’m a little shaky in the morning but relatively okay. The pregnancy pillow kept me comfortable and on my side, so there were no issues with the Ood Ball. My appetite is okay but I have to be careful and avoid any cold food. I have wooden utensils that prevent any metal from giving me that unpleasant shock that comes with neuropathy.
The tape and bandages on my port prevent me from taking a shower, so I use alternatives like waterless soap and dry shampoo to become presentable. It also means another day of button-up shirts. Not a problem lately. My flannel shirts fit right in once October hits.
I’m able to work on my to-do list and take full advantage of it, whether it’s something on the computer, errands in the car, or household chores. I keep going until a nap becomes necessary. No complaints. I’m the best at napping. It’s inevitable since I’m not sleeping a full 8 hours straight at night.
Day Three: The day is split in two. During the first half, I have to take care of any tasks I’ve put off. Usually, this means laundry, cleaning, and general housekeeping. It might include shopping or returns. If there’s something on my to-do list that needs me to be physically active, it’s crunch time. I have to eat a decent-sized meal, or what my appetite will allow.
Once I’ve had the Ood Ball attached for 48 hours, it’s time for the second half. By now my heart has pumped the last of my infusion into my body and the ball is deflated. Oscar uses the kit from the infusion room and a sharps box to safely remove and discard the bandages, ball, and IV line.
Within an hour of removal, I feel weak, shaky, and nauseous. I don’t mess around with nausea after the 2021 experience, so I take one of the two nausea pills I’ve been prescribed. Neuropathy is still going strong with cold sensitivity. I’m grateful that our current apartment has a fireplace. Oscar and the boys might be overheating, but they tolerate the fireplace adding that extra warmth so my toes and fingers don’t hurt. Another hour later, I’m extremely sleepy. It feels almost like fatigue, but it’s not painful.
If I have a chance during the second half, I grab a full shower, wash my hair, and change into clothes that don’t have a zipper or buttons in front. Sometimes the exhaustion kicks in too quickly and the shower has to wait for another day. Washing my hair has become less of a priority after the third round of chemo. It’s been thinning so much that brushing and combing it adds frustration and sadness to the situation. This would typically be at least three months’ worth, but it’s only two days of hair from my brushes and comb.
Day Three is generally mental, emotional, and physical preparation for the second half of the first week which is the hardest part of my chemo cycle. Stay tuned.
Team Hedgehog 