WELCOME TO "erica's struggle bus"
Hi friends! Many of you have already heard about my terrible, horrible, no good, very bad start of 2026. But I'd like to keep you all in the loop about what's going on. I promise there is snark.
Blog 2: March Mayhem - "You want me to do what?"
Blog 3: April: Chemo and Reality
Blog 4: May: Bald is Beautiful
In June, the chemo symptoms escalated. I planned trips, potted flowers and more.
Storytime...
You hear things at infusion.
Two to three hours is a long time to sit and think while you are in the infusion chair. It means a lot to have someone else there, a person who took off work or stepped away from life. If you don’t have a support person, you’re alone, surrounded by strangers and nurses.
There’s just half walls and curtains separating about a dozen patients and their support people. For the most part things are fairly quiet: Low conversations and TVs playing the news, soap operas and even a televangelist. You know, daytime TV.
It’s hard to not overhear what’s happening. Most of the time you drown it out, but on occasion a conversation between a nurse and elderly patient catches your attention.
It’s really unsettling for me to see the elderly patients come in and sit alone. Sometimes they struggle to contact their ride at the end of their infusion, going through a list of possibilities with staff who are trying to help.
Don't get me wrong, I know some people are fine doing treatment by themselves. But it takes a special kind of person to spend multiple hours alone in a chair, hooked up to multiple IV bags with only strangers surrounding you.
How many elders don’t have someone to sit with them — how lonely is that?
And so, this is your self-reflection for the day. Maybe you’re not a “support person” for someone who needs infusions, but is there something else you can do? Something that you keep mentally giving excuses not to? I'll be your conscience — go, do! Be with that person, visit, listen, buy them lunch, or a small gift, a card, etc. Do something good for someone who needs it. I am willing to bet they will appreciate it more than if you did nothing.
Here's a suggestion, courtesy of my mother-in-law, my mom and a family friend. Wrap 30 gifts (1 for each day of the month) and put them in a tote and watch how much that person looks forward to opening that small token every day. They don't have to be expensive gifts — go to the Dollar Store. Chapstick, candles, a card, their favorite candy, etc. I was so excited each day to open the gift just to see what the day brought! A few of my most recent gifts were a wellness diary, affirmation cards, coffee hard candies and bubbles!
Symptoms hit harder
After 11 weeks of weekly infusions, the chemo hits harder, different, heavy. I'm tired. Though tired has been a constant, this is an all-over tired that doesn't really go away anymore. In the last two big cycles, where I get three drugs, it has taken me all week to recover.
Monday: infusion
Tuesday: fine/functional
Wednesday: tired, getting achy
Thursday: chemo hits like a ton of bricks.
Muscles tired, sore, achy. Stomach just a little off — you aren't really sure if it's hunger or upset GI. Too much activity and my body thinks I'm running on a treadmill. Weird tastes get stuck on my palate. (I don't know what to say, maybe this is my version of the infamous chemo metallic taste?)
And then there is malaise.
Malaise. A general feeling of being unwell, uncomfortable, or "off."
That one word holds an entire mindset and mood. It can change hourly. Some days you can go from feeling a little rundown to feeling like you swam in a pool all day. Heavy chest, sore limbs and weighted down feeling.
The newest side effect I’ve noticed on the triweekly meds is skin hypersensitivity. Where basically your skin “hurts” to the touch. Not in the way of pain, but in the way that your hair hurts after having it in a ponytail all day. It’s more of an achy feeling on the surface that is just uncomfortable sometimes.
It's messy and chaotic, but oddly there's a rhythm to it that intensifies with each infusion.
Most days sleep is not an issue. I even hear myself snoring. A nap over lunch can be helpful, or just a rest throughout the day. But the weekly steroids upend sleep, leaving me awake for hours in the middle of the night. It's a cycle, a process. I cope, adjust, adapt.
And then there is chemo-brain, which makes you forget EVERYTHING, remember nothing and say some really dumb shit.
LET'S PLAN A TRIP... OR TWO
After planning a trip we gifted to my in-laws in May, Joel and I realized we miss planning a big trip. And so, we discussed our post-cancer adventure.
Italy? Back to France? Oh! Let's get the in-laws to Ireland. (YES! I can see puffins in Ireland!)
But in our research we found that it's actually better to see them in SCOTLAND (yes, I know, Iceland too — that's for a different time). And we knew from our brief time in Scotland two years ago we could easily get nature and city experiences — things to do for adults of all ages.
So our plan is two weeks there, one in the Highlands and one in Edinburgh and its surrounding area. We have plans for a day trip to see the Puffins — and many other adventures!
I know I said two trips — the second is just a baby trip. We need to get away, get out of the house, but do it in a way that I'm not compromising my health. So, between round one and round two of chemotherapy, we are actually taking a mini vacation to an Airbnb that has private beach access. I think we are both looking forward to some sea air and the sound of waves lapping up on the shore. A break from reality, as much as you can.
June Wrap-up
As we creep closer to the official halfway mark of chemotherapy, I have found that the little things, the routines have been helpful. But the days where you get to see others are the highlights.
Midway through June, my brother-in-law had the great idea to do a virtual game night! He said, invite who you want, we can have up to 8 people. And so, we ended up with 7 of us, but we had a blast. A few hiccups here and there, but got the hang of it. We had laughs and I think maybe a few inside jokes that will hang on for a while! A huge success, that will likely have a sequel.
I have gotten out of the house on occasion other than for infusion. Living near a state park has its perks. We can just pop over there for an hour or two, when I'm feeling well enough, to take some sunset photos. Well, we did that and invited a friend. We had a great time catching up and just taking random photos. It was a little warm that day, but nice to be out for some sun and laughter.
I told Joel that if I have to spend so much time at home, staring at the backyard, we have to do something to make it look better. It started with lights on the fence. They are just string lights, but they look great and give off so much light. What an improvement they are!
And then my Mom and I planted some flowers in flower pots, they have really taken off. Now I just have to remember to water them! It was a quick project, but instant gratification. I get to see the flowers every day and they remind me of all the things my grandfather taught me growing up. His flower beds were beautiful, with so many different flowers.
Water your flowers at night, if you do it in the morning you will fry them in the sunlight. Make sure they have a good soaking, not just a little bit of water sprayed on them. And pick off the dead flowers (especially petunias).
I made one mistake with the flowers though. I tried planting lavender without doing any research and failed. But I will leave it in the ground and see if I get a surprise lavender plant next year.
Oakley is learning what the water hose is. Every evening the last few days, I've been spraying him with the hose and he runs around the yard, living his best life. At first he thought I was crazy, but now he comes up and noses me after I put the hose down, wondering why we aren't continuing the game.
JUNE call out
Thank you to all of the nurses who take care of us at infusion, they show up every day and give it 100%. You are the best cheerleaders and teammates!
