It’s Monday morning. Those memes I see plastered all over social media every Sunday night hit home like nothing else- we must stop Monday from coming, but how? I always wake before dawn, anxious and displeased, but not for the same reasons as most. I’m not upset about returning to work from a nice weekend. I’m off on Monday, all of them for a while. Don’t be envious though, because I’m headed to the infusion center. I receive several drugs by IV infusion for MS and other chronic conditions weekly. I also get a monthly plasma exchange, which is a highly unpleasant experience the day of, and for several days after.
Infusion is not something I want to be doing, clearly. No one ever excitedly signs up for five plus hours weekly of IV treatments in six month cycles. There are times I don’t think the process is even helping the progression of my conditions. Other times I realize how blessed I am to be able to get treatment. There are people who can’t afford it, or have too much insurance red tape in the way.
Other people aren’t given the the gift of life long enough.
I am blessed, and I need to get my anxious and grumpy Monday morning self down to that infusion center every week with a smile, or at least take the grump monster’s roar down a lot of notches. So, bag packed, it’s time to hit the road. Infusion center, here I come. What did I pack? How do I occupy myself for five hours?
- Headphones- for music and movies on my tablet, and when I don’t feel like talking to the other patients.
- Tablet and phone- endless means of entertainment there.
- Neck pillow- for my long range comfort.
- Blanket- my temperature fluctuates during treatment and it helps me sleep if that’s what I want.
- Charger for my devices- the longer universal kind because they can generally charge everything and with the longer cords, they are usually easier to use reclined.
- Hard candy- for dry mouth and nausea.
- Tissues- the emotions sneak up on me.
- Book- a physical book, not an ebook, because there are a lot of times I don’t want to sleep, but need a break from the electronics.
- Magazines- for the same reasons as books, and because they’re nice to leave behind for the other patients.
- Homemade cookies or candy for the nurses- they work so hard, and are so kind. They deserve a treat.
The gnarly Monday morning traffic has been managed. I’m there, in the waiting room, listening for what hysterical mispronounced version of my name would be used to call me back to the large room full of recliners used for the treatments. One would think they’d get my name down pat after three years, but hey, that’s why I go by Ellie. The room is large and rectangular, with more corners than such a room should have. There are large windows, but they are up high, so the sunlight is always weirdly filtered. There are private rooms for the more seriously ill and first time patients. I’m always glad I don’t need the private rooms. I remember my blessings.
People watching is a favorite way of mine to pass the time, regardless of how I’m feeling. It feels awkward to be in the same room as cancer patients receiving chemotherapy, because they are there, some bald, all brave, and I’m there with my non cancerous illnesses that makes me feel like an imposter. I’m thinking about how many times I’ve been told to be thankful I don’t have cancer, which is a weird thing to say to someone. Of course I’m thankful I don’t have cancer, but it devalues the illnesses I do have. They are serious, and there are diseases other than cancer that can be terminal.
Then I realize there are other non cancer patients there, and none of this is a competition. We aren’t here to out sick one another, we are here for treatment only. I remember that I’ve had chemo in the past, in small doses, to treat my autoimmune diseases. Maybe, just maybe, I’m brave, too.
I watch the people, but I still have five hours ahead of me, more if it’s plasma exchange day. So my goal becomes making it through. There needs to be a giant sign posted of rules, or a class on how to act right before one is allowed in the room for treatment.
Here, my rules:
- Be nice. The staff is trying to help. Being mean doesn’t help anything.
- Don’t be smelly. Leave the perfume at home. Some people’s treatments are making them sick to their stomachs. Don’t bring in foods with a strong smell for the same reasons. I don’t want to see you eat, or smell it.
- For the love of everything, put your flipping phone on silent. Nothing aggravates me more than someone who gets 5,000 texts and phone calls while they are there. Try not to talk on it much, or loudly. Voices carry. People want to sleep sometimes. I always feel bad for those without headphones.
- If you bring children with you, please try and keep them from running around the room. Not everyone is receptive to that. Please bring them to me, though. I’d love a baby visitor.
- Don’t talk to another patient if they’re sending obvious leave me alone vibes. Emotions run high in the infusion center.
Thanks for reading this. It’s a sure sign that you love someone going through the infusion process. Having people who care is the most important part of getting through it. If you are going through treatment, stay strong. Please do not forget how brave you are, even when you feel it the least. Please let me know what you’d take to your treatments, how you stay strong, and your rules for the center.