So here’s to a beginning. I have been wanting to write for a while but haven’t been able to pull together the words as to all that I have been feeling and learning. It has been on my heart to share some of my experiences that have truly shaped me to be the person I am. It has pressed on me to share about some of my darkest times and how I was carried through. This blog is dedicated to the Lord, the very one who carries my world.

Sunday, May 29, 2016

Chemotherapy



It had been ten days since the kidney biopsy, but it may as well have been one hundred. As relieved as I had been to conquer my fear of enduring the kidney biopsy and subsequent admission to the hospital, a brooding sense of unrest came over me. I was oddly proud of myself, though seemingly insignificant, for getting through what I had so previously feared. It was our last resort. I had repeatedly done my best to persuade Dr. Arnold out of the need for the biopsy. That seemed too severe. I was so young. I was only just 21 years old. I wasn’t convinced I even needed such an invasive procedure. After all, the prednisone had seemed to help. I could walk again, move my joints fluidly and even exercise. But my body had other plans. My urine had continued to reveal protein and red blood cells. And so here we were, in the same solemn waiting room we had sat so many times before. I glanced at the pile of looked over magazines and noted an elderly woman with a cane and chalky red lipstick sitting directly across from us. Her eyes looked past us, and her thoughts were clearly somewhere else. Out of the corner of my eye I noted a small black portable radio faintly playing easy listening music. No one seemed to enjoy music in the waiting room. A large older man across the room with thick dark sunglasses sat with his head down. I began to wonder if the music in the waiting room ever helped patients to relax as the studies had claimed. It just added to my sense of unrest and growing annoyance at the whole situation. It distracted me from concentrating on the moments ahead. I scrambled to get my thoughts together and heard a petite brunette woman call my name. We quickly followed her and her turquoise scrubs into the exam room. We didn’t say much as she shut the door behind us and started to take my vital signs. The sound of the blood pressure cuff coming off was searing, and I felt my stomach begin to churn. I hated how the small exam rooms made noises sound so severe. Maybe it was the thin walls. Maybe it was lack of furniture against the walls. Maybe it was me.
Dr. Arnold entered the room moments later with papers in her hand. I knew those papers told the story of what my biopsy had revealed. I studied her face carefully for any clues. She sat down on her stool and looked at me with her big blue eyes and told me it was as we had presumed. The lupus had gone after my kidneys. I had what was called glomerulonephritis. There were six stages of this type of kidney inflammation. I was a stage 4, which was the most common and also the most dangerous. This meant lesions on over 50 percent of my kidneys. I was sick to hear this and almost in disbelief. I recalled my reading on that dreadful purple page and that patients with kidney involvement may go on to require dialysis and even kidney transplantation. What was happening to me? How could I not feel that occurring? It felt like a sick joke. She went on to say this required treatment. Aggressive treatment. There were several options. These options were ALL immunosuppressive medications commonly called chemotherapy.
How was this happening? I didn’t have cancer. Only cancer patients need chemotherapy! The sick joke continued.
I questioned how I could possibly require MORE medication? I had barely come to terms with the prednisone and all of its side effects. Or the Plaquenil that I had needed to take twice per day. Now to add on to this instead of subtracting from this seemed so unfair and only further solidified my fear that I was in fact not going to get better.
Dr. Arnold explained that the medications would work to knock out my immune system which had been in overdrive for nearly a year, ravaging my entire body. The prednisone had helped but the chemotherapy was needed to give it another good punch. By killing off the immune system the medication would help to also kill off the cells that were attacking my kidneys. I swallowed hard.
There were two options. Cytoxan or Cellcept. I was not anxious to learn about either, but she continued. She felt Cytoxan may not be the best decision for me, while aggressive, has been shown to cause sterility and may leave me unable to have children down the line. Instead she felt Cellcept would be a good choice, as an immunosuppressive it had been shown especially promising in patients with kidney involvement. I agreed. I knew I wanted a family someday. Although I didn’t know if that day would ever come. In fact it was looking more and more unlikely.
What would this chemo look like? Would the Cellcept make me lose my hair? I had only just started to regrow my hair that had previously left me with bald spots. Would I spend my days battling nausea and vomiting? I sighed deep, agreeing to give the medication a try, inwardly desperate for escape.

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