They want me to take chemo drugs, and I don't even have cancer!
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.
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 here, but I don't think so. So listen up.
You are not that powerful.
Sure, we're all unique. We each have gifts to share. But we are NOT, I repeat, not responsible for this disease. We did not, nor could we have created such a disease, 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 a number of things.
Saying yes to chemo.
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 the hope that this drug could be the answer. What if this was the medication that could alleviate my chronic pain? What if I was going to go into remission by using this drug? What if this chemo drug was the answer to everything?
The chemo experience.
I realize it's vain, but one of my biggest fears about starting this medication was the fear of losing my hair. Living with the new diagnosis and chronic pain was bad enough, I didn't think I could handle the loss of my hair, too. I found an over-the-counter supplement that was said to help, and I started taking it, along with the daily folic acid they prescribed.
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 after taking it, I decided to follow the path others had used. I decided to take it on Tuesdays, right before bed.
For me, Tuesday was the best day. I determined even if the side effects lasted more than a day, I'd be back on track by Thursday, which is when my son and I always do something. And since I work at home, I didn't need to stress about missing work due to side-effects. And yes, there were side-effects.
With my energy zapped, Wednesdays were spent sleeping or moving around at a snail's pace. By Thursday afternoon, however, I was doing well enough to enjoy my son's company. At least in the beginning.
The chemo result.
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? A whole lot worse and I didn't think that was possible!
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. Monitoring the lab work is a huge part of taking the drug. The blood would show how the drug was reacting with my body and since everyone responds differently, I was anxious to know my results.
One month later.
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. Returning home, I settled into my chair with blankets and a heated wrap. It was Thursday, and by the time my son got back, I was more miserable than I could remember ever being.
My son was doing homework, and I felt a fever coming on, which is concerning since the chemo drug suppresses the immune system. 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, I knew I needed to get to the clinic before they closed.
The clinic sent us to the Emergency Room, and once again I explained I had been taking immunosuppressant medication. It turned out to be a long night, with a 2:00 am transfer to the only nearby hospital with a bed. (an interesting story for another time)
Answering an early morning call from my hospital bed, the rheumatology clinic was calling to share the results of my blood work. My liver numbers were high, and they wanted me to stop taking the medication. Turns out, those energy zapping, pain increasing, GI side-effects were a clue. Add in the abnormal lab work, and it all culminated in a medication failure.
I failed chemo.
And I was taking it personally, blaming myself. Maybe I wasn't tough enough. What if I would have done this or that differently. What did I do wrong, I wondered. Nothing.
Life-changing diagnoses mess with our minds and change our reality. Our future will look different because we are different. What we must remember, however, is that we didn't cause the disease.
We are not to blame.
We have a disease, we live with a disease, and we ARE NOT the disease. Everyone responds differently to medications. When the drugs don't work for us, we hear the words “failed the medication.”
It's time to change how we interpret those words. The medication failed to help us; we did not fail anything. It isn't personal, and it's out of our control. We are not to blame for our disease, nor are we to blame when a medication doesn't help.
The only thing that is blameworthy is giving up. Don't do that.
Do not give up!
Chemo didn't work for me, and that's okay. I'm not going to allow this disease to define me. I will keep trying until we find the best medication for me.
Have you been blaming yourself for something out of your control?