Many people want to understand what I go through during chemotherapy. First, it is important to know that it is an infusion through my port located on my right side. The port is a plastic device installed underneath my skin with a catheter connected to my vein. It is not a glamorous experience; however, my family and nurses make it bearable.
Usually arriving around 8 AM I check in with the receptionist. Not usually being a tardy person, I am frequently late to chemo- because I do not want to be there. The nurse of the day will call me back for a blood draw. Before my appointment I rub lidocaine cream over my port to numb the area before the needle is punctured through my port. After my port is numb, I look over my left shoulder, take a deep breath in and I feel a push, hear the unnatural pop sound and have a kick of nausea to the gut. The nurse draws my labs while I look at a frame with multiple cancer ribbons. Sometimes the nurses like to spark a conversation, I find the distraction helpful. My least favorite part of labs being drawn is the saline wash because it smells like a flowery soap. The most common reaction to the saline is a taste usually salty but for me it’s a nauseating smell. The nurse puts a bandage around my port and leaves it accessed for my later infusion. After the quick blood draw Jacob and I escort ourselves out and head upstairs to check in.
A nurse will call me back, take my weight, check my vitals, and help me find my chair. Although early appointments mean battling rush hour in Fort Collins, I am guaranteed a better chair. The ideal chair is one with a heated seat option, closest to the window and with respectable privacy. The infusion center is very nice as it is only two years old and the design is refreshing with lots of windows. My favorite part is the heated blankets because being pumped with toxic chemicals and an IV drip turns you cold. As I settle in, one of the main nurses will come check in with me and let me know that we are waiting for my lab results. Only two times have I had the same nurse at first I wanted consistency, but now I appreciate getting to know more of them. The nurses really are incredible. Once my lab results are in the pre-chemo drugs begin. It is a simple start with two Tylenol and two Benadryl, this helps my body stay calm once the chemo hits my system. Dexamethasone is either pushed through a syringe or drips through the IV depending on the nurses preference. This is followed with the anti-nausea medication- Ondansetron. These pre-chemo drugs are really important to prevent vomiting and adverse reactions.
Then begins the chemo. It is a surreal experience to knowingly pump toxic chemicals into your body when you have worked so hard to maintain a healthy, pure body. But without the chemicals, the chemo, the disease would run rampant through my body and lose to the tumors. So, I take the toxic mixture as bravely as I can. My primary nurse brings the chemo in a separate bag and wears extra protection which includes two sets of gloves and clothes resembling scrubs. She also has another nurse double checking the pump. Similar to when you get an x-ray and the technician stands outside of the room, you are grateful that they take the precautionary steps to protect the medical staff but it clues you into the toxicity of the medication and process. The start of the chemo drip is uneventful, and no immediate reaction occurs. The first chemo is brentuximab than Adriamycin, vinblastine, and dacarbazine.
During the first few chemo’s, I was teeming with energy and had endless things to talk about. But with each chemo going forward, the less energy I had. Most of my time is spent sleeping or zoning out, I usually begin by trying to read but it’s only a matter of minutes before I’m asleep.
There is a reassurance surrounding me as I watch other patients received chemo- these people, to some extent, understand what I’m going through.
The Adriamycin comes next. In five minutes the nurse pushes through a syringe bright red poison. The chemo is so toxic that it cannot be pushed through the veins making a port necessary. Quite reassuring to have the red chemicals pumped directly to my heart rather through my arms because my veins can’t handle it.
Every hour or so I visit the restroom due to the large volume of liquids being pushed through me. Following Adriamycin my urine turns orange from the bright red liquid. They instructed us not to share restroom with individuals in our home within a few days of receiving chemo; however, I use public restrooms and non-patients use these restrooms. It becomes difficult to not feel like a science project or hazardous waste.
I’ve had a few interactions with fellow patients all of them positive but always with some disconnect. A dad talking about his daughter my own age going to prom, a grandfather sharing his grandchild’s college accomplishments and myself- a young adult trapped by a diagnosis. Not to undermine anyone else’s struggle but it hurts to be going through something so traumatic, so young. I find it easier to stick to myself and anyone else who accompanied me to chemo to prevent feeling more disconnected from my previous life.
Depending on my nurse and whether I have a doctor appointment, chemo takes between three and seven hours. During the first few rounds I felt normal afterwards but now I’m wiped of all energy and begin to feel nauseous right away. This is because the side effects are cumulative and I believe my body understands what is happening due to the stagnant routine.
About a month ago I had a PET scan that showed my cancerous tumors being defeated or as my mom would say three men down. However, I must continue treatment to assure there are no more cancerous cells in my blood and to increase my chances of going into remission and staying there. Although this is something to celebrate it has made each infusion more difficult to show up to and each pill more difficult to take. I just want to be done and it feels like I should be done. Rejoice the good news but understand how the fight is that much harder.
Wow Elizabeth! This was so insightful and a genuine glimpse into your experience. Thank you for being willing to describe such detail. We are looking forward, though not possibly as much as you, for these visits to be a vague memory. Love you!
So so so impressed. Thanks for sharing in detail and thanks for being an amazing human being!!!
“I lift up my eyes to the mountains — where does my help come from ? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip — He who watches over you will not slumber… the Lord is your shade at your right hand… Psalm 121:1-5
I’m so sorry you have to do Adriamycin as part of your chemo! I had that too and a friend and I called it “The Red Devil”. It made me so sick AND I got a metallic taste in my mouth when it was administered. If you experience that, slowly drink a milkshake when that poison is going in your body. The ice cold drink also prevented mouth sores from that drug (which I experienced my first round). It’s so awesome that you are journaling all this. It will be a great remembrance years later when you have forgotten all this mess! Prayers for continued healing!
You continue to be in my thoughts and prayers, Elizabeth. Keep moving forward. You are getting closer to the end. Love and hugs!
Elizabeth, my thoughts and prayers are with you. Thank you for sharing! So proud of you!
Elizabeth. I am so proud of how strong you are in the face of going through this very difficult chemo process. You are near to the finish line and before you know it you’ll be vacationing with us at the beach.Keep up your positive attitude as you go forward.
I finished almost the same (mine was ABVD) aggressive chemo regimen in 2016 for the same exact disease and diagnosis. I cried when I read your words. It was a good cry, and reminded me of how grateful I am to be here two years later, still in remission, and feeling in very good health at age 56.
You are so brave! It is awesome how you describe your experiences so fully and honestly. You Honor those who are around you too see you endure. My wife died from acute myeloid leukemia five years ago. She inspires me every day. Insist that others around you really know what you are going through. They will be better for it.
PS
Just as you have hope for yourself, also have hope that others around you can learn and grow from knowing what you are going through.