We got back to Dirty Jerz at some unGodly hour on Saturday morning. Safe and sound.
Friday was crazy. My feelings of dread on Thursday turned out to be well warranted. By the end of my appointment with Dr. Allen, I was sobbing loudly.
It’s bizarre trying to express it all. I had actually been giving some rather good news. The EMG and Nerve Conduction tests had shown improvement in the nerves in my arms. My reflexes are back in them. So it appears the plasmapheresis is working, working so well the nerve regeneration can be charted now. I also learned that my nerve damage has remained strictly confined to my sensory nerves. The motor nerves are fine as ever. It also seems to be no further demyelineation- this after four years of monitoring.
So why the sloppy, ugly crying (trust, it was ugly, snot and all)? I realized that with each piece of good news, the likelihood of my being admitted to this trial was decreasing. When I asked what my chances were, Dr. Allen coolly replied that he would have to consult with Dr. Burt and the final decision would be a three way one, and I would have an equal vote. My heart sunk. “It’ll be two-one, with my loss,” I screamed internally.
“What then?”, I blurted out. “I mean, if I’m not accepted. What would you advise I do? What next?”. Damn, my voice was cracking. It was screechy. Dr. Allen’s associate, the kindly Dr. Rao, stood across from me. I caught the look on his face. He felt sorry for me. That look- empathy or pity or something- made my chest tighten. I looked back at Dr. Allen. He looked so young. He’s older than me, though. I had asked the previous day. He didn’t give the actual number, but made it clear in an indirect way. He used that same tactic in answering me then. He suggested I take immunosuppressant drugs, and if I wanted to be really aggressive, even Cytoxan. “Wait… that’s chemo,” I sputtered out confused. Yes, it is, and IF I were accepted into their stem cell study, I’d be given it. I sat confused. “But why? For how long? I can’t live perpetually on that, with a weak immune system. And what about the plasmapheresis?” He answered, still in a remarkably cool, almost detatched way, that he believed I could eventually be weaned off it and replace it with the Cytoxan. I was angry and confused. And Dr. Rao was making the ultimate, “Awwww, it’s okay” face. He looked like he wanted to hug me. Instead, he passed me a box of Kleenex.
I stared at that box. It was actually Kleenex, not a fake, generic brand. It was gray and white with blue lettering. I thought about how identical boxes seemed to be in every nook and corner of Northwestern Memorial. Did Kleenex sponsor this hospital or something?
Dr. Allen startled my thoughts by announcing he wanted more blood work done. Like, right now. He’d leave the script up front by guest services. “Is this something I should do here or back home?” He wanted me to do it *here*. After getting it and walking on the wrong indoor foot bridge and then finding the correct one, I sat in an even more specialized lab then the one I had been sent to on Wednesday. I began asking the questions to a lab staff member that I couldn’t get out to Dr. Allen. I found out the name of the blood panel and looked it up on my iPhone.
“Paraneoplastic panel”, I typed into Google’s search. The lab tech said they were going to have to send my blood out to the Mayo Clinic. It’s a rare test. I saw a link to the Mayo Clinic with “Paraneoplastic Autoantibody Evaluation, Serum”. I clinked on it. “Huh? Yeah, I can’t understand this.” I went back to Google for help. I typed in “Paraneoplastic Syndrome” and again found a link for the Mayo Clinic. I clicked on it.
Paraneoplastic syndromes of the nervous system are a group of rare disorders that develop in some people with cancer.
Paraneoplastic syndromes of the nervous system occur when cancer-fighting agents of the immune system attack nerve or muscle cells. Cancers commonly associated with these disorders include lung, breast and ovarian cancer.
“He thinks I have cancer. Damn.”
I looked up. In this little room, there was one of the omnipresent Kleenex boxes. Gray, white and blue. I didn’t reach for it, though. No tears came out.
On the ride home, we listened to some more classic rock, then some country, and finally, by Ohio, switched off the static-filled radio. Heading back East listening to Jigga. Seemed appropriate.
On “Magna Carta, Holy Grail,” I heard parts of “SomewhereinAmerica”:“Cause somewhere in America/ Miley Cyrus is still twerkin”.
I laughed. Miley twerks, Kleenex boxes sit at the ready, and I may have cancer.