Friday, June 29, 2012
May 3rd, 2012:
I drove for 20 minutes today. Not only that, but it was on the highway! It was scary, and I was definitely more nervous than last week when I drove for the first time. Sarah and I needed to bring her car to the mechanic—who happens to be about 30 minutes away—but before we did that, she needed to go into the office to work for a bit. Sarah followed me as we traveled to drop off one of the vehicles at her parents’ house first.
We stayed in the right lane at 65 miles per hour for practically the entire time. Only once did I feel the need to pass a bus that was going 15 miles per hour under the speed limit. What I noticed, though, was that the faster I drove, the dizzier I felt. I couldn't focus on any of the road signs, and, thankfully, that didn't matter because I knew where I was going. It was tiring, that's for sure, but I am so glad that I did it. Little by little, I keep telling myself.
On to other matters: I'm not feeling the best today. Not health-wise, but emotionally. There is something very important happening tonight and I think I will be missing out. What is this event that has me so worked up? It's the opening night of The Avengers. Many of my friends have updated their social media statuses with statements exclaiming their excitement to attend the midnight showing tonight. This may sound insignificant in light of all of the problems that I've been having, but those issues are the reason for my inability to watch this film. To me, this is not just an ordinary movie. This is a culmination of years of development by a movie studio and a comic book company; this is an event I have longed for since I began reading comics as a young boy; this is a movie written and directed by my favorite television and movie creator of all time.
When it was announced back in the Spring of 2010 that Joss Whedon would be taking the helm of tomorrow's blockbuster movie release, The Avengers, I probably could have cried a river of joy—I didn't, but I could have. This is the man behind such television shows as Buffy the Vampire Slayer, Angel, Firefly, and Dollhouse; the script of Toy Story, and the brilliant 24 issue run on Marvel's Astonishing X-Men comic. Never have I followed a creative genius so closely, as I have Joss Whedon.
Seeing The Avengers on opening night at midnight was my plan. Nothing would stop this from happening. Nothing. Well, almost nothing.
I can't hear. I've been unable to watch some of my favorite television programs, listen to any music—plenty of talented artists have come out with new albums since all of my troubles began and I am unsure I will ever be able to fully appreciate them—but now, the biggest let-down of all, is not being able to see this movie. Now, there could very possibly be streams of sadness flowing from my eyes soon.
Sarah tried calling some of the movie theaters nearby today, in search of one that might be showing the movie with Closed Captions, but to no avail. It seems that some cinemas have a Closed Captioned theater, but they play a different movie each week. Apparently, The Avengers is not the movie of the week. WHY?!?!??! Patience, Lord. Teach me patience. I want to say that I am okay with this. I want to say that it will be fine and that I will just see the film eventually, that there are worse things that could happen—but I can't. I'm angry and that's all there is to it. This disease has taken so much away from me. Why does it have to take away one of my passions as well? Dumb.
Thursday, June 28, 2012
“Do you want to drive?” Sarah asked as we sat around her parent’s kitchen table. “It would just be around the block; hardly any traffic.”
Rose, my physical therapist, had asked me recently if I had tried driving yet and I told her that I hadn’t. I didn’t think I was ready to take that step; however, she suggested that maybe I try practicing in an empty parking lot, like I used to do when I was first learning how to drive. I took it into consideration at the time, but hadn’t really given it much thought until now.
“Umm…maybe. Do you think I should?” I replied.
“That’s entirely up to you, sweetie. I just thought since we have the time, you might want to give a try.”
I thought about it for a moment. This would be a huge milestone in my recovery process, but I was unsure if I was completely ready. I don’t know, I thought. I’m not sure I can do it. Oh, just do it. Stop being such a wimp.
“Okay, yeah.” I said with an ever-growing smile. “I want to try.”
Sarah stood up, walked into the kitchen, grabbed the keys from the hook and handed them to me.
“We don’t have to go too far. If it’s too much, just let me know and we’ll pull over and switch,” she said.
“Okay. Thanks, baby.”
We walked outside toward the car. Sarah grabbed my shoulder and looked me in the eyes, speaking as
clearly as possible.
“Why don’t I back the car out of the driveway and then we’ll switch,” she said.
“You don’t think I’ll be able to do it?”
“One thing at a time, Max.”
“Yeah, you’re probably right,” I smiled at her.
I waited in the driveway, standing straight, trying not to sway. When Sarah parked the car on the side of the road, she got out, and motioned for me to come over. She walked around to the passenger’s side and got in, while I made my way to the driver’s side door. I took a moment to do everything I was taught when learning how to drive: put on my seatbelt; adjust the mirrors; adjust the seat; make sure Sarah had her seatbelt on.
When I was all set—my heart beating at a rapid pace—I took a deep breath, put the car in “D” and began to roll.
My nerves were kicking in as I looked out ahead, but to my relief, there were no cars on the road. My heart slowed its swift movement. I could tell that I was dizzy from the way the sky and the land bounced up and down, but I focused in; I wanted to make this happen, so I continued on, turning right at the next side street.
As I drove, I heard Sarah’s voice, but didn’t dare to take my eyes off the road.
“How are you doing?” she asked loud enough for me to hear.
“I’m good,” I said, turning onto another road. “It’s weird. I feel dizzy but driving just feels so natural.”
“It’s like second nature. Do you feel like you are picking it up without any trouble?”
“Yeah. It’s great. I feel great,” I said with a smile.
I continued to drive at a snail’s pace—I was glad the roads were deserted and I didn’t have to worry about any cars getting stuck behind me. I squinted as I honed in on the white and yellow lines. This was huge. My emotions were all over the place: exhilarated, anxious, scared, happy, and satisfied.
I drove the same route two times before we finally closed in on the house. I parked the car and Sarah and I got out. She walked around the car toward me and wrapped her arms around me.
“I am so proud of you,” she said as she gave me a kiss.
“Thanks, baby! I feel great. A little tired, but great.”
I made progress today. My sense of independence was reawakened, and I am remembering how good it feels.
Tuesday, June 26, 2012
April 23rd - April 29th:
Since I have fallen ill, Sarah and I have been the recipients of multiple forms of support from many people. Three different families in our church have cooked meals for us; Sarah's siblings and their spouses have brought us food and given us grocery money; our friend, Aaron, has driven me to a couple of my appointments and spent time with me when I was feeling lonely; a childhood friend of mine has kept in touch through text message on a weekly basis and has continually let me know that he is thinking of me; I've been speaking with multiple people in a support group on Facebook—60 individuals who all have Cogan's Syndrome and know exactly what it is I am going through and a little bit of what Sarah is going through as well. These friends and their kindnesses have been bright lights in a dark season of my life.
My journey with Cogan's Syndrome has taught me that people can be pretty amazing. Sarah and I have witnessed firsthand a remarkable love and kindness bestowed on us by many individuals. I've mentioned already the gift that my brother and his wife shared with us, the daily caregiving from my wife and her family, and everything above; but I have yet to mention some very specific acts of generosity that have both warmed our hearts and set us on our knees—or more like our bottoms, as we needed to sit down from the overwhelming gestures—in thankfulness to God.
Two young couples from our church—both of whom we have grown to become friends with over the past couple of years—shocked us with monetary gifts to add to our savings for medical bills and the like. Becoming a one income household so suddenly has meant a lot of changes with our spending habits as well. Sarah and I had just gotten home from a weekend away in New Paltz when we saw a letter in the mail from Brian and Marcy. We looked at each other, knowing there was bound to be an encouraging word of support enclosed. Upon opening it while sitting on the side of our bed, a check fell out of the card. I held it—tight in my hands—but forced myself to read the letter first. It was written by Brian. He started off by describing how sad he was to he hear about my condition and the problems that Sarah and I have been facing. He went on to talk about how when he and his wife dealt with health issues two summers before, a couple in the church gave them a check to help them out, and how Brian and Marcy believed it was their responsibility to help us out in a similar fashion.
When Sarah and I finished the letter—still fighting back tears—we looked at the check: 300 dollars. There was no fighting anymore. The vents let loose, and streams flowed down our cheeks. Sarah and I held each other; no words were necessary.
A few weeks later, I was sitting on a reclining chair at my in-laws house, reading a book, when my phone received a text. I couldn't hear it, but I saw the screen light up from my peripheral as I read. I picked up the phone: it was from Sarah.
“Drew and Daisy gave us a thousand dollars,” the text read.
My mouth hung agape. I couldn't believe it. My hands shook as I tried to text Sarah back.
“What?!?!?!” was my reply.
A few minutes later I opened my phone to read her response.
“Yeah. Daisy came up to me at work and handed me the check. I was shocked and in tears.”
“Wow. I don't know what to say,” I typed back. “Tell her thank you so much. I'm crying. I can't stop crying.”
It was true. I couldn't stop. We had witnessed yet another miracle.
Tuesday, June 12, 2012
I woke up feeling miserable today. Not sick—although my head was pounding from a headache that began last night—but rather depressed about my situation. Sure, some days are harder than others. There are days in which I feel discouraged and frustrated at certain aspects of my disease that render me useless; however, this was different. I think it probably started with the 30 Hour Famine that the youth group was involved in this weekend.
Sarah and I have been youth group leaders at our church for two years now. This past year, we had the privilege of teaching the ninth grade. Recently, the teens have been raising money to help world hunger through the organization World Vision. On Friday night, they met at South Church in Hartford, CT along with the youth from that church, and went on to fast Friday into Saturday evening. Sarah and I went and tried to be as involved as possible.
As leaders, we were assigned a group to head up, overseeing activities, games and discussion. Sarah and I immediately panicked. I get very nervous in situations like this now and usually all of the responsibility tends to fall on Sarah. Sarah spoke with one of the other leaders and due to the fact that not all of the teens who signed up for the night were actually there, he let us off the hook. So instead, Sarah participated a little bit while I sat around and watched.
This is pointless, I thought. What am I even doing here?
This is what I had felt numerous times throughout the duration of the event, though I still wasn't positive about what those feelings truly meant.
See, I love those kids. Working with the youth group has been one of the most rewarding experiences of my life. I've developed fantastic, meaningful relationships with a number of the students, but now, I can't even hold conversations with more than one at a time. Having normal conversations with teens can be relatively cumbersome when you can’t hear what they are saying.
Last night, after a really long day of minimal interaction at the event, I went to sleep feeling disheartened. I couldn't place my finger on it at first and even today—feeling upset and tired of the limitations I've had to deal with—I still didn't understand what had sparked those feelings until I began to write this entry.
I went to church with Sarah, exhausted, but hoping to procure some semblance of normalcy. I tried to listen to the sermon through a headset, but the pastor just sounded like a gurgled mess. How long will I have to deal with this? I wondered. I don't know if I can take it anymore. I finally told Sarah how I was feeling. At my second Remicade treatment, Mia handed me a slip of paper with the name, email address, and Facebook support group created by her patient who also has Cogan’s Syndrome. Sarah suggested that I get in touch with the woman. She thought it might help me to begin connecting with others who are going through the same ordeal. I told her I would—and I will—as soon as I finish writing this entry.
Our friend, Cristina started dating a guy named Doug a couple of months ago. I haven’t exactly had much of a chance to get to know him, so after church, Sarah and I went out to brunch with Cristina and Doug. I really wanted to get to know Doug better. I wanted to be able to listen, talk, and laugh; but all I could do was sit and wait for Sarah to explain finished conversations or the end of jokes to me. I felt defeated. I believe that this is the first person that I have met who didn’t know me before Cogan’s. Meeting a new person, trying to learn about them and feel comfortable around them while having this disease is not an easy task.
We went over to my in-laws afterward, and I began to write today's entry. Immediately, I realized what triggered this extended state of depression: It was the 30 Hour Famine. Well, not the event itself, but what being at the event allowed me to see. I have been keeping my emotions bottled up for months now. I haven't talked spoken in detail about how this all affects me, because I don't want to think about it. All day, every day, I read and sometimes write. I use these two hobbies of mine as a means of retreating from my problem. Having spent almost twelve hours with the teenagers, and not being able to be a part of the activities opened my eyes.
Today, Sarah started drafting up a document on a small lined sheet of paper titled, “Max’s Can-Do List.” I can play scrabble; play cards; hold one on one conversations; play mini-golf (maybe); go on short walks; read; write; whistle; and snap my fingers. It’s a short list, with a few impractical additions, but it’s a start.
I hate how debilitating Cogan's Syndrome has been for me. I hate that I can't drive; that I can't work and see the kids at the daycare; that I can't talk to my friends in a group setting; that I can't be a mentor on a Sunday evening at youth group; that I can't hear my wife sing—the list could go on. But I don't want all of this to destroy me. There are things that I can do. I think it’s time for a change.
Today was a typical day.
I've been unable to work. It’s been a month and a half since the last time I was able to go to the daycare and play with the kids; since I was able to read them a story before nap or lead them in a circle time activity. I’m starting to really miss it. I miss watching Billy enter the room with a smile on his face, wearing his new work boots and fire fighter hat, ready to show off his cool outfit. I miss listening to Beckah tell me I should shave my beard; that I’d look better with no beard. I miss the hugs and high fives and their innocence. It’s one thing to be off of work for a week—even if you’re sick—it’s sometimes nice to just have that relaxation time. I, however, have been out of work for six weeks with hardly anything to do. I can’t drive, I can’t watch television, I can’t listen to music; my life is a bore.
For a couple of weeks, I was doing a lot of writing. I was working on projects for thescifichristian.com as well as some short story ideas which have yet to really pan out. But after a while, I began to immerse myself in reading. It’s practically all I do now. In the past month, I’ve read a fantasy trilogy by Andy Remic, Joe Abercrombie’s First Law trilogy (currently on a fourth by him), The Hunger Games trilogy by Suzanne Collins, and The Lovely Bones by Alice Sebold. I guess you could say I’ve been catching up on my leisure reading—which I was mostly unable to take advantage of while still in school.
Sarah worked from home today—as she does most Mondays—and I woke up with her.
“Can I make you some breakfast?” I asked.
“Baby, you don’t have to do that. You should rest.”
“I can do it. I need to get up and be a somewhat active,” I assured her.
She tilted her head and gave a sympathetic frown.
I made banana pancakes and hot coffee. It felt good to be able to do even that slight task. Sarah seemed to really enjoy the food, which gave me a sense of accomplishment. I was doing a little something for her in the midst of her dedicating day after day to helping me. She makes light of her responsibilities and jokes around that she may as well get hired as a personal assistant with all the driving, calling and faxing she does for me.
When I was all finished I picked up my book, The Heroes, and read for hours.
Just before lunch, I figured it would be a good idea to do my physical therapy exercises. I’m supposed to do them two times a day. It has been almost two weeks since I began, and I’m starting to notice a small change in my ability to focus on things while moving about. The exercises themselves are still quite difficult. I struggle through them, doing my best not to get too aggravated, but it’s hard. I usually do them in the kitchen, away from Sarah’s work desk, in hopes that she won’t look away from her computer at my abysmal attempts to stay balanced. Not only is it frustrating to not be able to stand up straight and steady, but it can also be somewhat embarrassing.
After lunch, I opened my book again. I feel badly that reading is all I do. I’m sure it looks to Sarah as though
I don’t spend enough time with her. She’d be probably be right, too; however, there are a very limited amount of things that I am capable of doing at this point—which is hard for me as a man. I can’t do things around the house without feeling dizzy or overwhelmingly tired; I can’t watch movies with her; I can’t drive her anywhere. All I have to keep me sane and to help me to not think about my situation as much are books. So I keep on reading. This has become my ordinary day.
I pulled my cellphone out of my pocket and looked at the time: 2:35 pm. We had been in the waiting room at Dr. Rolla’s office for 35 minutes, watching as patient after patient were escorted to meet with various physicians. I was getting impatient and I could tell that Sarah was too.
“Wasn’t our appointment supposed to be for two o’clock?” I asked with a frustrated tone.
“Yes,” Sarah replied, “this is getting ridiculous.”
“Maybe we should say something,” I said.
“Let’s just wait a few more minutes.”
When I was first diagnosed by Dr. Russo, he had mentioned that we should set up an appointment with Dr. Rolla, the hospital’s Rheumatologist, to make sure that the diagnosis of Cogan’s Syndrome was, in fact, correct and to see if there were any other internal issues.
I looked at the time again: 2:53pm. I don’t think I have ever waited this long for an appointment. What the heck?
“Alright, I’m going to ask what’s going on,” Sarah said.
Just as Sarah placed the magazine down that she had been reading and readied herself to stand up, we heard the call—well, Sarah did anyway.
“Max Pfeffer?” the doctor called out.
I was still looking at Sarah, wondering why she hadn’t actually stood up yet when she nodded to me, motioning toward the doctor. I turned to see and said, “Oh.”
We followed the doctor to his personal office. He asked me to explain what happened—I’ve been getting pretty good at telling the story—and then kindly ushered us into an examination room. After a brief inspection, Dr. Rolla spoke.
“It looks like Dr. Russo’s Diagnosis was correct,” he said. “I don’t see any other problems. If you were having other issues, we would most likely be seeing some sort of exterior rash or internal pain. I would continue to take the medication that he has prescribed for you and follow his orders. I’ll personally contact him to let him know about our meeting and so that he can keep me informed with your progress. You can come see me again in a few months, unless you start experiencing other symptoms, in which case you’ll see me sooner.”
I was having a decent hearing day in my right ear—which tends to fluctuate daily—so I was able to hear most of what Dr. Rolla had said.
Sarah and I thanked Dr. Rolla and exited his office. We walked to the elevator in pursuit of the parking garage.
“Well, that was quick,” I said. “The actual visit. Not the waiting around for an hour part.”
“Yeah, it was. And he seemed really nice.”
“Yeah, he kind of made up for the first part. At least we know that there isn’t anything else wrong with me, and that we don’t have to add another doctor to the weekly visit list.”
Thursday, June 7, 2012
April 2nd—April 5th:
What a busy week! I haven’t been working, but with the number of appointments I’ve had, it feels like a full-time job! Okay, at least a part-time job. I had four this week and I am thankful that they are through. I am exhausted, but alas, they were all important facets of my recovery process.
Rather than talk about all of my appointments in detail—rehashing similar news as to what I already know—I’m going put my primary focus on my first day of physical therapy.
Just to give a brief overview of the week: on Monday I had my second Remicade infusion treatment with Caitlin; On Tuesday I had a follow-up appointment with Dr. Mazen which included yet another hearing test—nothing has really changed in that arena; Wednesday, I had my first physical therapy appointment; today I had another follow-up with Dr. Russo.
I was originally supposed to start physical therapy a week ago with a woman who I had briefly met when I had my first appointment with Dr. Mazen; instead, I had to begin the pre-treatment of Prednisone administered through an IV. Doing both in one day seemed out of the question. I couldn’t imagine spending hours in the hospital—needle in arm—having medicine pumped through my veins, and then having to learn how to walk again right after. It was an unlikely scenario.
So it had to be today. Sarah and I made it with a few minutes to spare—having narrowly passed through a construction site on the highway (along with an accident due to the traffic). We sat in the waiting room, Sarah intensely reading her copy of Mockingjay by Suzanne Collins while I chose a library borrowed edition of Before They Are Hanged by Joe Abercrombie (I know, fantasy novels have quite illustrious titles). I frequently gazed up from my book as various patients were ushered through the office doors when physicians called their names. I wonder when my turn will come, I thought. Will she be as kind and patient as Dr. Mazen and Dr. Russo have been thus far? Will she be as helpful and as reassuring? I felt nervous, since my balance issues had not yet been squarely addressed.
The door opened and a tall, thin, woman with shoulder length sand-colored hair walked through. She wasn't the physical therapist who I'd met two weeks ago so I wasn't positive it was my turn. She smiled at me and asked me to come through. Well, at least I suspect she did, because when I got up to follow her, she didn't ask me to sit back down.
“Hi, I'm Rose.”
“I'm sorry?” I leaned in close, examining the movement of her lips.
“I'm Rose,” she smiled, “Do you always use the cane?” She pointed to the cane that Mia had ordered for me.
“I’ve only been using it for about a week. The nurse at the hospital gave it to me during my treatment. She said it would help me feel more secure while walking. It's helped.”
Rose grinned at me again and nodded in response. I was already starting to feel comfortable with her. We were now standing in an open room with exercise equipment and patients working on an assortment of muscle groups. She stretched out her hand and asked for the cane. I handed it to her. Rose asked me to walk from one end of the room in a straight line and back to her. Here we go, I thought. Right down to business. I moved, slowly but surely with heavy breathing. I stretched my arms out to the side as my legs began to wobble, trying to keep my balance—trying to keep from falling over. I made it to the other side and turned, feeling as though my body was about to collapse, but doing my best to look confident. I walked back to her.
“Good job,” she said.
Rose pointed to a line of tape on the floor about ten feet long. “I want you to try to walk down this line, one foot in front of the other, as if you were walking on a balance beam.”
I followed her directions. This was harder than the first task. I focused intently on the narrow path in front of me. As of late, I had been relying on the cane as a guide. Sure, I had still looked down at my steps before—making an effort to walk in a straight line—but I hadn't been worried about others watching me. It was unnerving to know that now all of the attention was on me, even if it was only from one person. What would normally only take me a few seconds to complete felt like minutes. I was beginning to sweat. This was no ordinary perspiration either. It came on fast. It was profuse. Like someone had snuck up behind me and thrown a bucket of water right at my armpits.
When I finished my assignment, I placed my arms at my sides, trying my best to hide the dampness underneath. Rose brought me into a smaller room. She taught me how to do an array of exercises, explaining each one in great detail. When she was done demonstrating, she had me practice the exercises and then printed them up for me to bring home to use.
“You did a great job walking in a straight line,” she assured me. “Your balance isn't actually that bad, really. These exercises are essentially slightly harder than ones that I would normally give my patients. They're going to help you retrain yourself to focus. Within a few days, you should already start to notice a difference and then you can progress to more difficult exercises. I don't mind you using your cane in public, but at home you should really get used to moving around without it. The more practice you get, the faster your eyes will re-train themselves.”
I thanked her for her help and walked out to meet Sarah. We drove out and had a brief exchange with the elderly, friendly ticket guy in the garage.
Later on that day, I tried working on my exercises while Sarah was working. They were difficult and aggravating. It's interesting how much I’ve taken for granted. When I lost my hearing, I thought about all of the things I would never hear the same again: music, voices, laughter. Even though I have been dizzy for just as long, I haven't really thought about it much, other than that it's a pain. Sure, I couldn’t even watch television because the motion was too much to handle, but I just chose to read instead. Now, though, trying to learn how to walk in a straight line, closing my eyes and attempting to stand still in one place, focusing on a still object while I move my head from side to side—I can't help but miss being “normal.” For a brief moment, I wanted to give up; and it was only my first day. Why does it have to be so hard to stand still? Why can't I move forward without feeling as though I'll fall on my face? Just move. Just move. It was odd telling my body to do every day movements and having it ignore me. I forced myself to continue. I chose to believe that this had to work. It had to.
Monday, June 4, 2012
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. (http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/35151.html)
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.