By now most people in my network know I have cancer. But I'm a private person, so most people don't know the facts. And most people are gracious enough to not only respect my privacy, but understand I don't want to retell this tale every time I run into someone new. So for all of you curious creatures out there, here they are: the facts.
About a year ago a found a small lump above my collar bone. I didn't think anything of it and didn't get it checked out. The reason? A mixture between avoiding the issue and not wanting to pay for a visit to the doctor's office that wouldn't be covered by my insurance. To be completely honest, I'm sure it was more of the former. I hate the doctor's office. All of them. The dentists, the gyno, general care physicians. If it involves a waiting room and some type of exam, I don't want to do it. Which is ironic since never in my life have I had more than a cavity filled. No broken bones, no surgery, I didn't even wear braces. But somewhere along the way, I developed a phobia of the doctor's office. Now that I have the big C, of course I realize that insurance and a fear of the doctor are both terrible reasons not to get a lump checked out. But as they say, hindsight is 20/20.
Eventually I either stopped noticing that lump or it disappeared completely. The details are a little blurry since I was living it up in Boston enjoying my cancer free existence. But this past fall, I noticed something else in my neck. It was no longer a small lump, but a mass. Now back home in Detroit with a much better health insurance plan, I made an appointment with my Primary Care Doctor. She told me it was probably an infection - that maybe I needed my tonsils removed. To me, that was scary enough.
I'm a researcher by nature. I crave information. I'm the type of person that researches my symptoms to try and self diagnose my problems. Again, this probably goes back to my fear of the doctor's. Did the possibility of Cancer come up in my research? Of course. But as anyone that has ever used WebMD to diagnose your ailments knows, Cancer is always the outcome. Have the sniffles? Upset stomach? Headaches? According to WebMD, YOU MAY HAVE CANCER! So did I actually think I had Cancer? No.
It was at the ENT's office that cancer was first mentioned. After having a tube stuck through my nose to see down my throat, everything looked clear, but I was told I would need a cat scan to learn more. "To rule out Lymphoma." But even then, it was a nonchalant, "we need to rule out Lymphoma." I was never told it was a real or likely possibility. Maybe I should have known when they also scheduled a biopsy, where they'd have to knock me out, slit open my neck, and remove a lymph node. But as much as WebMD says you have cancer, you never actually think YOU have cancer.
When the results of the cat scan came back, the ENT told me in a 30 second phone call that the mass in my neck expanded down into my chest as well. There was no sense of urgency. He said it was fine to wait for my biopsy that was scheduled almost a month later. It was my mom, a retired nurse, that read the scan, sent it to experts in the field and realized this was not something we wanted to wait on. My mom was on the next flight to Detroit.
I found out, not by my Doctor, but by my mother, that the cat scan showed that the tumor was surrounding my heart, lungs and trachea, causing my heart to enlarge and pushing my trachea to the side. Not a reassuring diagnosis. But at this point we still didn't know if it was cancer. At this point, cancer was the last thing on my mind. All I could think about was this tumor strangling my heart and causing it to explode. But this cancer didn't just show up over night. This cancer is slow and takes its time in it's destruction of my body. But with a cat scan like that, recommendations from top doctors in DC, and a mother's instinct, waiting was no longer an option.
I spent two days at the University of Michigan Hospital receiving a variety of lab work, blood tests, and a needle biopsy of the lymph node. Before any of these tests, I was told by the nurse, within the first 10 minutes of being in a room, that there was a 90% chance it was Lymphoma. NINETY PERCENT. After spending 10 years in Hemotology, he was able to tell this based on the placement of the mass alone. Yet, in all the research I had done, I never came across any article, webpage, anything that said, "If you have a mass in your neck and above your collar bone, it's probably cancer. GET IT CHECKED OUT." Why isn't THAT on WebMD?
Sure enough, that nurse was right. 48 sleepless hours later, I was diagnosed with Hodgkins Lymphoma.
So here I am, an official member of the club no one wants to be in.