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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