The Hidden Intricacies of Chemo

I came across a post on a lymphoma message board where someone was asking questions about a lumbar puncture. Feelings of nervousness came rushing back as I pictured myself leaning over while my oncologist injected a needle into my spine. She warned my husband to leave the room if he got queasy from that sort of thing. Afterward, I had to lie flat for an hour to avoid the dreaded severe headache. I had to go to the bathroom beforehand, otherwise, I would’ve had to use a bedpan since I wasn’t supposed to move.

I don’t think I’ve told even my closest friends about this part of my treatment. I had it done 5 times, once with each round of chemotherapy. This procedure on its own would have freaked out the pre-cancer me, but somehow it just became another part of my routine. 

People’s perceptions of chemotherapy vary.

Unfortunately, there are many people who have been affected by cancer in some way. But how many of them, and those not affected by cancer at all, really understand what chemo entails? I know I didn’t before I was told I Had Cancer. I must’ve thought it was some drug you took to beat cancer. Chemotherapy can actually be a drug to treat any disease–not just cancer. Also, it’s usually a combination of treatments. I never could’ve imagined that mine would involve 24-hour intravenous drugs in the hospital for days at a time, shots and pills at home, and lumbar punctures. There are so many hidden intricacies of chemotherapy treatments. 

Your chemo plan is unique to you.

I’m still astounded that my brilliant doctors came up with a plan for me and my stage 4 lymphoma that worked. I always took someone with me to appointments and took extensive notes to better keep track of this plan. The life-saving recipe was so detailed, with slight tweaks along the way. I quickly learned that fellow patients with the same diagnosis even had different treatment plans due to age, genetic mutations, and other factors. 

There are usually bumps in the road.

There are side effects associated with every drug. When I was first diagnosed, I needed a blood thinner because the cancer had caused clots near my heart. The dose ended up being too high for me and caused severe nosebleeds. I had a reaction to steroid eye drops, causing pain and impairing my vision, and to a platelet transfusion, causing an itchy rash. I often felt it was too difficult to explain these specific complications to others, and found myself just telling everyone I was doing alright.

Even your closest friends and family members may never truly understand.

It’s hard to talk about the intricate details of chemo. I don’t want to upset my friends or even gross them out by talking about it. I know they are so happy I am well, and that they are proud of me for going through such a difficult process. Maybe they don’t need to know all the details, but there’s something about them not knowing that leaves me feeling alone sometimes. Only I and my closest loved ones held our breath as the cerebral spinal fluid drained during the lumbar puncture, hoping it was clear in color. It’s hard to describe how it felt to be a prisoner to an IV pole for days at a time as toxic drugs pumped into my bloodstream, ironically saving my life. 

You move on but you don’t forget the pain.

There were side effects with every drug, every part of my chemo treatment. The first night, my nurse slowly pushed doxorubicin, also known as “the red devil,” into my PICC line. I had to hope and pray I didn’t have a reaction and that it didn’t affect my heart. I wouldn’t even know for sure until a post-chemo follow-up with the cardiologist. 

I look to the future while reflecting on the past.

If you or someone you know has cancer, remember that treatment varies from person to person. You might hear stories about how things worked or didn’t work for others, but they may not apply to you. I expected to feel nauseous and lose weight, but instead I gained it from steroids. I am someone who likes to plan, so going with the flow during treatment was unfamiliar to me. I found comfort in trusting that my doctors would use their wealth of knowledge to tailor the chemotherapy to my needs. 

Every now and then something will remind me of the pain I experienced–both physical and mental, but I know it was all necessary and worth it to be living a full life today.

Photo courtesy of author.