I am writing a book on this experience and have posted what I have so far of it below. Feel free to read!
It started with a bump. I walked over to my mom, who was busy grading papers (she teaches first grade). “Mom, there’s this weird bump on my scalp, and I don’t know what it is. It’s hard and small and round.”
“How did you find it?”
“ I was moving my head around on my pillow, and I felt it when I was rolling my head around.”
“ Honey, I’m sure it’s nothing. Just show the pediatrician the next time we take you for a checkup”. I always trusted that my mom knew best, and never doubted her for a second. However, maybe this was because I was only nine years old,at most,at the time.
When we went to the pediatrician, I pointed it out to him. “Oh, it’s definitely just a cyst. Don’t even worry about it”, he said after examining it. We believed him, since he was a doctor with years of experience. Over the next few years, we showed it to a hairdresser and a second pediatrician. They all said, “It’s just a cyst, and there is oil inside it . This is what is making your hair greasy. Get it remover when you can.”
My dad happens to be a doctor. He said, ‘It’s nothing’.
A few weeks after seeing this hairdresser (in 2011), the one that said that the bump had oil inside it, we set up an appointment with the dermatologist because of my dandruff. That was when things started getting weird...
“Hi, I’d like to make an appointment for my daughter, Morgan Katz, with Dr. Orsini. She has horrible dandruff and we were wondering if the Dr. could help her get it under control”.
“When would you like to come in?”
“ Well, it’s not urgent. Do you have anything in the next few weeks?”
“ I have a 4:30 appointment on October 5th,2011.”
“We’ll take that.”
Before I knew it, October 5th,2011 arrived. It was my sophomore year of high school, and we walked into a quiet waiting room filled with senior citizens. After waiting a while, my name was called, and we were escorted into a large office that had windows surrounding the examination area. There was also a large mirror on the door to the office. My heart pounded as I anxiously awaited the doctor’s arrival. What happens now? What is she going to say?
All of a sudden, the door opened. A lady I had never seen before walks in. My whole body tenses up. She introduces herself as Dr. Orsini. She has long brown hair pulled back in a pony tail. Her voice was calm and reassuring. She is not wearing the white lab coat traditional to doctors; the lab coat is gray. We talked about the dandruff issue for a long time. Apparently all I needed was some sort of a fancy shampoo. We were about to leave when it occurred to me to show the doctor the bump. Now or never! She looked at it and said, ‘ I don’t like the way this looks. It’s red. That’s a bad sign”.
“What should we do about it? Is it serious?”
“ I don’t know. You have two options: wait and see what happens in a few months, or remove it”.
What if it’s something horrible? If I don’t get it taken care of, it could get worse. I’d better have her remove it.
“I think it’d be best to have it removed.” This was completely my decision.
“In that case, go make an appointment with the receptionist up front.”
Mom walked up to the receptionist’s desk. Was I really going to go through with this?
“I have an opening on November 14. Would that work?”
“Yes, that will be fine. Thank you!”
Fear is staring at me in the face. Her stare is so intense that I cannot look away. Fear is a four year old girl who never takes no for an answer. She creeps up on me every now and then using a sneaky walk to trick me into thinking she isn't there. Fear resides in my back pocket. Sometimes I forget that she is there, but she nudges me every so often, preventing me from forgetting about her. I tell her to leave me alone. She does, but she always ends up coming back sooner or later. When I am at school, I force Fear to hide so that nobody but me is aware of her presence.
Fear stayed with me right up until November 14th,2011. I had to fight her every day, especially during school. She’d constantly invade my mind and make it hard to focus. I worked hard to drown her out, and I succeeded in doing so. Then November 14th creeped up on me....
I walked into the dermatologist’s office. Fear is doing her usual routine, and showing no sign of stopping. I attempt to drown her out by listening to the peaceful voice of Taylor Swift on my iPod. It works great until we were called into the procedure room that felt more like a prison cell.
There was a green chair the color of vomit in the center of the shiny institutional floor. Behind the chair sits five cabinets, all of them ominous looking. Although I do not know it at the time, there is also a metal tray of sterile medical instruments directly behind the chair. It is full of needles and scalpels.
We waited for approximately 45 minutes for the doctor to come in and start the procedure. I become more and more anxious with every passing minute. When the heck is she going to come!? I have to go home and study!
There was a sudden knock on the door, and my muscles tensed up. Dr. Orsini came in and tells me to lie back in the chair. She then begins injecting me with local anesthetic. “This will hurt, but only for a second”, she says. I would soon learn that this was an understatement. There are four injections of anesthetic, and each one feels like a knife cutting into my head. Eventually, the injections do their job. All I felt is some pressure during the biopsy. I also feel the stitches going into my head when the procedure was over. My brain keeps screaming, Stop!, but I know this is not an option. I had to finish this procedure since it has already started. My mom and another nurse who I do not know were holding both of my hands the whole time. The doctor was asking me questions such as, “How is school?” and “ What is your favorite subject?”. This distraction technique was good-hearted, but it did not help. I cannot take my mind off of what was going on behind my head. Before I knew it, the procedure was over. A wave of relief floods my entire body.
“I’ll call you soon with results”, said Dr. Orsini.
I came home from school the next day exhausted from the pain of the biopsy site. The stitches were irritating, and the incision itself was very tender and sore. I would learn later that this was only the beginning of the pain. It had pretty much been a normal day aside from that. Life is good until 5:00 p.m when my life would be changed forever.
Beep! Beep! That sound (and the flashing red light on the machine) signaled that there was a message on the answering machine. When I clicked the answering machine, I listened to the following: “ Hi, Marla. This is Amy Orsini. I have some test results for Morgan, so please call me when you get a chance. Thank you”. My body froze. It could only be bad news, as she didn’t tell me anything in the message itself. If the results of the biopsy were normal, she’d have told me. My gut told me that something was horribly wrong. I felt the knot in my stomach grow even tighter as my dad dialed the number to the doctor’s office.
You have Cancer.
“ Uh huh...yes.. Uh huh... yes.. of course.. thank you, Dr.”
“Who are you talking to,Dad? What’s going on?”
“Honey, sit down. I was talking to Dr. Orsini. She has your test results from yesterday.”
“It’s cancerous. You’re going to have to get it removed again.”
Oh my God! What’s going to happen now? Chemo? Radiation? Surgery? A combination of the three?
“What’s the treatment?”
“From my understanding, you’re going to need at least one surgery, possibly two. She didn’t really give me any specific details, but she did say that you’re going to need to find a specialist in this sort of cancer.”
“What exactly is this cancer called?” I was afraid to hear the answer, but wanted to know just the same.
“ It’s a very long name. I think she said something like Dermatofibrosarcoma Protuberans.” The name sounded like a bunch of random letters put together in some sort of foreign language.
Dermatofibrosarcoma Protuberans (DFSP for short) is an extremely rare subtype of soft tissue sarcoma that accounts for only 1% of all soft tissue sarcoma diagnoses. Although the recurrence rate is high (my doctor has never had a recurrence in any of his patients!), the chance of the cancer spreading is only 5%.
“So what do we do now?”
“ We have to find a doctor. I’m pretty sure Dr. Orsini has a surgeon in her practice, so we’ll start there.” Great. Back in that horrible office? I don’t think so!
“O-Ok”. I did not want my dad to sense the fear in my voice. It would only make the situation any more uncomfortable than it already was. Just so you know-- men and girls are two completely different species of humanoid.
When my mom came home from work that night, she was remarkably calm. She didn’t freak out, but was obviously concerned. “We’ll get though this somehow,” she says reassuringly, patting me on the shoulder. Yeah, right. Who’s we? I’m the only one who has to go through this.
A few weeks later, we saw the first doctor. The door to this particular office said Ross M. Levy, MD. My legs shake with anxiety as I approach the door. Before long, we are instructed to sit down in an office that looked very similar (but not identical) to the one that the biopsy was preformed in. The only difference is that the door to this office says ‘Surgical Dermatology’ instead of ‘General Dermatology’. The word surgery alone makes me nervous. Here goes nothing!
‘He’ll be right with you’. The dumpy young nurse walks out of the room, failing to acknowledge me.
It seems as though hours pass before the doctor even shows up. Finally, the door opens. A very handsome young doctor walks through the brown wooden door. He has slick brown hair, lightly tanned skin, and the most gorgeous eyes that I have ever seen. OMG-- he is HOT!
“Mr. Katz. Morgan. Nice to meet you. I’m Dr. Levy. I hear that you’re dealing with cancer. When were you diagnosed?”
“A few weeks ago, on November 15.”
“Did they do any sort of sizing tests?”
“Not so far.” He sighed. I don’t know how to interpret that.
“Alright. I’m going to examine you, and then we’ll discuss treatment options.”
The examination itself was painless. I didn’t even think about what was going on, but instead about what lurks around the corner- the unknown.
“Mr. and Mrs. Katz, Morgan, I have an idea.”
“We’re all ears.”
“There’s a specialized sort of technique called Mohs surgery. It is the best method we have right now to treat this sort of cancer. What we do is cut the layers of cancer out, one at a time. After each layer, there is a 45 minute resting period so that we can use a microscope to determine if we’ve cut out all the cancer cells. We know the surgery is done when we see no evidence of cancer cells under the microscope”.
I finally asked the question that had been on my mind for days. “Will I be awake or asleep?”
“Most likely asleep. The surgery takes about 6-7 hours. I am hesitant to do this procedure on a teenager, as teenagers usually are more anxious than adults. There’s also the option of doing this while she is awake. We’d do it over a few sessions, each lasting a few hours. However, I don’t think it’s a good option because of what I said earlier about the whole anxiety issue.”
The tears started to flow out of me like a faucet. I couldn’t control myself. The hot doctor just sat there and stared at me as though I spoke Greek. Why the heck is he just sitting there? What a moron! My dad and the doctor talked for a few minutes and used all of these confusing medical words. I didn’t hear any of it. What was there to say? I had cancer.
“So, what have you decided about which doctor we’re using? Are we using Levy, or are we going to keep looking?”
“Your dad and I talked, and we decided to contact the dermatologist your Grandpa uses. He’s been going to see her for quite some time now, and she seems like a good fit.”
We saw the dermatologist, and it would be a lie to say that I even have a vague recollection of that appointment. All I remember was hearing the words, “You need an MRI. I don’t know if I can do the surgery unless I see how big it is.”
A few weeks later (December 3, 2011), I finally had the test done, and it took about two hours.The machine was like something out of a science fiction movie. It was big, gray, and looked like a spaceship. I asked if I could listen to music, and the technician said that the cd player was broken. My heart sank. What in the world am I going to do the whole time?
The MRI started, and it was as though someone was mowing the lawn in my ear. Even worse, there wasn’t anything to do but stare at this little silver nail that was screwed into the top portion of the machine. Unfortunately, just when it appeared that the worst was over, the technician informed me that I needed an injection of contrast. I don’t do well with needles, and the technician (along with my mom) had to physically hold me down while he injected the red contrast into my vein. The injection was done, and eventually the MRI was finished.
We got a very encouraging phone call a few nights later. It turned out that the cancer itself hadn’t spread, and was only the size of a pencil eraser. Perhaps the future was brighter than I had thought when this had all started. The dermatologist wasn’t comfortable with operating on me due to the size, but she referred us to Northwestern Memorial Hospital’s cancer center for help.
My legs shook. My heart raced. My whole body was covered with goosebumps. We walked into the big institutional-looking building that is Northwestern Memorial Hospital. When we walked inside, I was amazed at what I see. The hospital doesn’t resemble a hospital at all, but a hotel. There were escalators leading up to other floors, concierge desks in the lobby, along with comfortable-looking couches. This is the nicest hospital I’ve ever been in!
We had about two appointments that day with different doctors, and I felt like I had entered a different world, one that was full of doctors, medical tests, and fear. I felt like a prisoner in my own skin.I wanted so badly to be able to go back to my own body and return to normal life. Unfortunately, this living nightmare wasn’t a dream.
Our first stop that day was at the dermatologist’s office. I would be having the Mohs surgery here, and we wanted to meet the doctor first. When we walked into the office, I knew immediately that I would feel comfortable with this doctor. He was warm, friendly, and most importantly, he had a sense of humor. Dr. Alam (the surgeon) explained what he would do. It was basically the same as the last couple of doctors we had seen, but in a more honest sense. Towards the end of the appointment, he said, “ You aren’t going to like me that day. You can feel free to swear as much as you want.” Yeah, right. I’ll probably be too nervous to swear, but I appreciate your sense of humor!
One down, one to go. Our second and last visit of the day was to Oncology to meet Dr. Wayne, the surgeon who would take care of me now (after Dr. Alam got the cancer out) and for years to come. He would manage my treatment and follow up (and recurrences if they occurred). I did not know what to expect as I walked into the Robert H. Lurie Comprehensive Cancer Center, nor did I know what to expect when I met the doctor himself.