Monday, June 4, 2012

Treatment (Living With Cogan's Syndrome)

March 21st – March 26th:


Sarah came with me to my first pre-treatment day. We parked in the hospital parking lot because we needed to stop by Dr. Russo's office to check my blood-work before we could continue on to my appointment. Since we didn't park at the cancer center, we weren't sure how to get there, and Trudy actually left her post in the office to walk us through hallway-after-hallway, down an elevator, and outside across a courtyard to get there. Trudy and Sarah had the same phone and seemed to bond over that. It felt good to know that we were dealing with really good people.

The lady at the desk in the cancer center placed a wristband on me and ushered us into a room meant for cancer patients. I sat in a chair next to a man who was already in the midst of his chemotherapy treatment. He looked up from his book, nodded and smiled as I tried to make myself comfortable. I glanced over after he returned to his reading and gazed at the thin tube protruding out of his hand, attached to an infusion pump. I looked at back of my own hand, coming to grips with the reality of my situation. This should be an interesting day.

“Hi, I'm Caitlin!” pronounced my nurse with a big smile as she entered the room. “How are you doing?”

“I'm fine,” I said, returning her smile after catching most of what she had said. She was a thin, blonde woman in her early thirties. I shook her hand, but I didn't want to speak much. My hearing was so bad and I was anxious about the day in general. The thought of having anything longer than a short conversation was too taxing.

Caitlin turned to Sarah and introduced herself. She then pulled out a folder and said, “I'd never heard of Cogan's Syndrome before, so I did some research on it last night.”

I nodded but I didn't hear everything.

“It's really interesting. There isn't much information online about it.”

“I'm sorry,” I said, shaking my head in a plea for her to repeat herself.

“There isn't much information about it. But here,” she handed me her folder, “you can check out what I've found.”

“Thank you,” I said. I read through the description:

Cogan's syndrome is a rare, rheumatic disease characterized by inflammation of the ears and eyes. Cogan's syndrome can lead to vision difficulty, hearing loss and dizziness. The condition may also be associated with blood-vessel inflammation (called vasculitis) in other areas of the body that can cause major organ damage or, in a small number of cases, even death. It most commonly occurs in a person's 20s or 30s. The cause is not known. However, one theory is that it is an autoimmune disorder in which the body's immune system mistakenly attacks tissue in the eye and ear. (
It was basically the same as what Sarah and I had found when we had researched on our own. She also gave us some paperwork detailing the drug I would be receiving with basic information, uses and possible side-effects.
After a little while, Caitlin began preparing the IV. She tapped my left hand multiple times, trying to find the best vain—once she did, she slid the needle in. As she taped it to my hand, ensuring its stability, another nurse came in.

“Hi, I'm Mia,” she introduced herself and I leaned in close in an attempt to read her lips. “I hear you have Cogan's Syndrome. I have a patient that comes in once a month to be treated for Cogan's Syndrome.”

“You have a patient with Cogan's Syndrome?” I replied.

“Yeah. I had never heard about it before her.”

“Huh. That's interesting,” I said, continuing to keep my thoughts to myself. I wonder how long she's had it? I wish I could talk to her about it. Stupid Doctor/Patient confidentiality.

“Well, it was nice to meet you, Max. I'm sure I'll be seeing you again soon,” she assured, appearing to hum as she walked away.

“It was nice to meet you too,” I said, as she turned to leave. I looked back at Caitlin who began to speak.

“It could be a little while,” she said. “Your medication isn't quite ready yet. Once it is, it'll only take one hour. In the mean time, you'll have to take benadryl and tylenol to ensure you don't have a bad reaction.”


I was starting to notice that the nurses in this place were energetic; bopping around as they attended to their daily tasks. Caitlin handed me a small, plastic cup with the pills inside. She then placed a cup of water on the table next to me and left the room.

I downed the pills.

I looked over at Sarah. She was reading The Hunger Games. I opened up my book, The Blade Itself by Joe Abercrombie and began to read. I didn't get very far though, as the benadryl and tylenol kicked in and made me very drowsy. I fell asleep, only to be awoken a little while later by Caitlin hooking up the medication to my IV.

“Alright. Only an hour to go,” she smiled and removed her medical gloves.

“Great,” I said.

Periodically, another nurse appeared to take my vital signs as I slipped in and out of slumber.

Caitlin and Sarah started talking and eventually the man next to joined the conversation. Sarah later told me that he was trying to flirt with the nurse, who brushed it off and remained kind but professional.

About a half an hour later, Caitlin entered the room with a couple of other nurses and assistants. They carried in a cake and brought it to the man next to me. I couldn't hear everything they were saying, but I gathered that it was his last day of chemotherapy. I donned a grin. Good for him, I thought. He told me to take care and shortly after, he left.

When the medication ceased to flow through my veins, the machine next to me began to blink, and as I am told, beep, and Sarah and I prepared to leave. Caitlin gave us discharge instructions and Sarah signed them for me.

“It was great to meet you, Max. And you too, Sarah,” Caitlin said.

“You too,” we both said.

“I will be here tomorrow, but I won't be here with you on Friday. I will be back again for your first infusion on Monday, though!”

“Alright,” I replied. “Thank you. See you tomorrow.” Sarah put her arm around me as I drowsily walked off. The combination of my vertigo and the infusion caused my legs to wobble in my attempt to move down the hallway.


Sarah brought her laptop to the hospital on Thursday so that she could work during my treatment. She was thrilled about the free wi-fi and the ability to be with me without having to miss work. I brought my book, hoping to finish it so that I could move on to the second book in the trilogy.
Caitlin greeted us right when we arrived. She was the one to place the wristband on me this time and led us to our destination. She has turned out to be really nice. Her genuine friendliness has made me feel like I am her most important patient and helped me to relax—I have even started to speak up a bit more.

Most of the day was very similar to Wednesday, except this time there were two cancer patients in the room with me. I was at the far end of the room, with an older man sitting next me (I'll call him Mike), and a man in his early fifties to the left of him (I'll call him Phil). I could tell—even without being able to hear—that Phil was a bit obnoxious. He had this demeanor that screamed, “I don't care about anything and I am the greatest.” I turned out to be right.

Sarah later told me that Phil was speaking poorly about Caitlin when she wasn't in the room. She also told me that he bragged about how he was going to be pick up smoking again when he finished his chemotherapy, even though he had already quit. Phil figured that if he was going to die, he may as well relieve some stress by smoking cigarettes. Caitlin pleaded, “Can you please pick up another hobby instead?” I tried to give him the benefit of the doubt and hoped he was acting this way as a defense mechanism to hide any real feelings he may have had. Sarah explained to me that Mike introduced himself and encouraged Phil. Mike was the leader of a cancer support group. He was gentle and kind, using Phil's first name in conversation and relating to him by talking about boats. I didn't bother taking part in the discussion, as it would have been too difficult for all parties.

Before we left, Caitlin reminded us that she would not be my nurse on Friday, but that Mia would be.


Sarah's boss has been overwhelmingly gracious to her throughout my whole ordeal. Since Sarah has had to take me to a plethora of appointments, he has allowed he to work from home more often (even though she is only allotted two work-from-home days). Today was no different. She came with me to my final pre-treatment session and was able to work while the process moved along.

Mia was quite fun, with an energetic and loud personality. She made sure I was really comfortable as well and even offered to order a cane for me, to help me with my balance issues while walking around—to which I immediately agreed.

“Remember the patient I told you about who has Cogan's Syndrome?” she asked.

“Can you say that again. I'm sorry.”

“No problem. Remember...” she repeated herself.

“Yeah, I do.”

“Would you mind if I told her about you? I won't say your name or any other information other than that you have Cogan's Syndrome,” she said. “The woman belongs to a support group on Facebook. Maybe she could get you connected.”

After having Mia echo her statement a few times, I finally answered, “Yes. Please, that would be great.”

Before we left, Mia handed us some paperwork with information on my impending Remicade infusion on Monday.


My first day of the regular infusion of Remicade went by much like the other days; however, Sarah had to go into work today, so her mother, Michelle, dropped me off while she baby-sat her three-year-old grandson and my nephew, Gabriel.

When I had first gotten sick, I dropped down from 150 pounds to 135 pounds. I didn't think that I had yet gained all of my weight back—even though it had been over a month. I assumed that I was at about 140 pounds, but I was wrong. I was back to my normal weight, which subsequently forced me to wait longer than usual to get the medication and start the treatment because the amount received is based on weight.

While I waited, I read through the second book in Joe Abercrombie's The First Law trilogy; I worked on adapting a movie script into graphic novel form for a friend and business partner; I slept.

My treatment finally began about two and a half hours after our arrival, and lasted about the same amount of time. It was a long day, and I was exhausted. My mother-in-law came to pick me up with Gabriel. Gabriel came over to the chair I sat in—IV still in my hand—looked at me, unknowingly, and then gave me a high-five. Caitlin offered him some ice cream before we left, which he did not deny.

My experience with the treatments thus far has not been too bad. I started out a bit wary and nervous, but managed to make the most of it and have become a little more confident in my interactions with the hospital staff. Each day after treatment, I go home and throw myself onto my bed, sinking into it and allowing sleep to envelop me.  

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