Receiving a diagnosis of a chronic, incurable disease can be both a relief and a nightmare, depending on how long you’ve been living with unexplained symptoms.
And then the life-changing reality of living with the disease sinks in. And what happens next?
We blame ourselves. It’s a dirty little secret common among those of us living with a chronic or terminal disease. We blame ourselves, but we don’t tell anybody.
We receive a medical diagnosis of a disease that is so mysterious; even the experts don’t understand what causes it. They don’t know how to prevent it, and the numerous treatment options work for some, but not for many.
The disease is so baffling, no one can find a cure, yet here we are feeling responsible for getting it! Okay, maybe I’m just talking to myself, but I don’t think so. So listen up.
We are not that powerful.
We did not, nor could we have created such a condition, within ourselves.
We need to remember this always. Especially as we try different medications intended to slow the disease’s progression (and with any luck, put us into remission!)
In this post, I shared my decision to try the chemotherapeutic drug recommended for treating my new diagnosis of rheumatoid disease. It was a difficult decision, and I considered several things.
Chemotherapeutic drugs are known for horrific side-effects. Even though the dose of the chemotherapeutic drug I’d be taking was significantly less than the one a cancer patient gets, I was still scared.
What if my hair fell out? What if I felt worse on the drug? What if it didn’t work?
And then there was the fear of what would happen if I didn’t take the medication. What if this drug could help me and by not taking it, my disease continued to progress, and I ended up with severe deformities in my hands and other places throughout my body.
On the other end of things, there was hope that this drug could be the answer. What if this was the medication that could alleviate my chronic pain? What if I could go into remission by using this drug?
What if this chemo drug was the answer to everything?
Unlike cancer patients who go through intense doses of chemotherapy, the protocol for me involved taking this new drug once a week. Since I didn’t know how I’d feel on the drug, I decided to follow the path others had used and take it right before bed.
With my energy zapped, the following days were spent sleeping or moving around at a snail’s pace. Within two days, however, I was doing well enough to enjoy time spent with my loved ones. At least in the beginning.
As the weeks moved forward, the number of side-effects increased. And they were lasting a whole lot longer than a day and a half. On top of that, my pain was getting worse, not better. Of course, they tell you it can take weeks or months to notice improvement, but feeling worse?
I was miserable while still holding on to hope. Maybe this was just how it was supposed to be until it took hold and helped.
Two days after taking my fourth dose, I was a mess. Barely able to move, I finally made it to the clinic to have my blood drawn. Monitoring the lab work is a huge part of taking the drug, and I was anxious to know my results.
Returning home, I settled into my chair with blankets and a heated wrap. By the time my son got back from school, I was more miserable than I could remember ever being.
I could feel a fever coming on, which is concerning since the chemo drug suppresses the immune system and puts you at a higher risk for infections. Using all my strength to go downstairs for the thermometer and return, I collapsed back into the chair’s cocoon I’d created.
My chest was hurting, and the shortness of breath was worse than usual. Within thirty minutes, my fever had spiked a full degree. At 102 degrees and climbing, I knew I needed to get to the clinic before they closed.
Because of my chest pain, the clinic sent us to the Emergency Room. I developed a migraine in the midst of everything else and found myself isolated from my loved ones as the WiFi did not extend to the emergency room bed. It turned out to be a long night, with a 2:00 am transfer to the only nearby hospital with an available bed.
As I lay in my hospital bed early the next morning, exhausted from the lack of sleep, the phone rang. It was the Rheumatology Clinic calling to share the results of my blood work. My liver numbers were high, and they wanted me to stop taking the medication.
It turns out those energy-zapping, pain-increasing, GI side-effects weren’t usual, and the abnormal lab work was confirmation. My experience with chemo turned into a medication failure.
Chemo didn’t work for me, and we’ve now added a new drug allergy to my list.
It’s hard not to blame myself. I question what I could have done to make this drug work for me. Wanting to feel better and having no control is an emotional place to be. But blaming myself for a medication failure is about as productive as blaming me for the disease itself. It accomplishes nothing.
Besides, I’m simply not that powerful.
This post was previously published on Annpeck.com and is republished here with permission from the author.
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