During the most romantic time of our lives, AKA our Honeymoon, we found it. It being the lump on the left side of my neck. It was tiny; smaller than a pea. We shrugged it off because one, we were on our HONEYMOON in Curacao. Two, we didn’t think anything of it. Seriously. I’m always on the computer, my neck is always sore, so I figured that I had a knot in my neck. No biggie. Let the romance take it’s course and we’ll worry about this another time.
Fast forward to March of 2016 this little lump that was possibly conceived on our Honeymoon (hehe) had quadrupled in size. It had started bulging from my neck which was not pretty. At that point we knew this was something that we should be alerted about. Like everyone who jumps the gun, I thought I was going to die. I googled symptoms, “round, hard, no pain extrusion in neck” on WebMD. Every possible forum said either calcified lymphnodes or CANCER. Me being a bit more on the dramatic side of panic, picked CANCER. Here’s why.
My paternal aunt Maria (bless your soul Auntie), had been battling cancer for almost 11 years. She had Medullary Thyroid Carcinoma. It was an aggressive cancer and spread into her liver and lungs. Her thyroid was removed. Part of her larynx was removed. She had undergone radiation on two occasions (pretty intense and extreme to undergo radiation twice), chemotherapy, and constant experimental drug exposure. Not to mention, all of the difficulties she was having with breathing. Through all of this she smiled through every bit of pain. She was uncomfortable but refused to give up.
One evening while checking in on my aunt, I asked her how she found out that something might be wrong. She told me she found a lump, the size of a quarter on the left side of her neck. It was round, hard, and it didn’t hurt when she pressed on it. Exactly like mine. After telling me the details, she questioned the reasoning for asking. I didn’t respond. I’m such a jerk but I didn’t want to cause any alarm. The last thing I wanted was to scare her. Oddly enough, carrying this little secret around actually kept me from communicating with her. I was too afraid. I was afraid to be another person in our family to fall victim to the very thing that was robbing the life from my Auntie. I didn’t want to talk about it. I ignored it. For a full month. Until my husband bothered me about scheduling an appointment with the doctor, like every day. He was relentless and he wouldn’t stop.
After dealing with some stupid health insurance BS, by mid April I finally got an appointment with my general practitioner in what seemed to be like one of those “Don’t worry. It’s nothing” kind of appointments. I even dropped the “Cancer” bomb about my aunt. Nada. The doctor wasn’t even phased by that suggestion. I get it. Doctor’s can’t freak out. They just can’t. They see lumps and bumps all day, all week, month and year, so it just makes sense that they try to keep their patient at ease and not jumping to conclusions. But I felt so uncomfortable not having the “CANCER” flag taken seriously.
Luckily for me, we moved fast in getting me in to see a radiologist. The not so lucky party for me was what happened next. Prior to my meeting my doctor, at check-in I had to update all of my information, as my husband and I had just married and moved into a new home. New phone number. New Address. New email. I arrived fifteen minutes early to do specifically that. I am telling you this merely to inform you for what happens next.
By mid May, I started getting nervous, as it had been a whole month and I heard nothing from the doctors. I figured, if it was urgent they would have called me. On May 19th I had a yearly physical scheduled. I arrived, checked in electronically and was instantly alerted on the screen that I didn’t have an appointment. I was super confused so I checked in with the front desk clerk. The gal checked her records, confirmed that I did indeed have an appointment originally scheduled for that day. She mentioned that they called multiple times to tell me that my doctor had to reschedule. I was confused at this point, as I didn’t get a call. She left briefly and came back with a sizeable binder. Opened it up and searched through it for a few seconds, and voila. “Here”, she said while pointing to a log of all of the times they tried to contact me. A log with perhaps 20 entries. I never received one of those calls. I quickly asked her to confirm the phone number. Sure enough, they were calling the old number, the number that I spent 10 minutes during my last appointment updating with the previous clerk. I was pissed. As I stood there in disbelief, the gal was reading off dates, times, and reasons for the call. As she was going through, she mentioned radiology. “What about radiology?” I asked. She explained that my doctor got back the results from the radiologist and wanted to see me right away. “When did she call?” I asked. The gal responded, “Almost a month ago”.
“Unbelievable. No one thought to send me an email or a letter to try and get a hold of me??” I was outraged. The gal then went through her logs and read notes,
“Yes, they did send an email and letter”. I explained to her that I hadn’t received anything. I was so confused. So back to my profile she went and sure enough all of my information had not been updated. WTF!!?? I asked to speak to my doctor immediately. To my misfortune, my doctor had left on holiday out of the country.
On June 10th, 2016I got a letter from my doctor and it went a little something like this,
“We have made numerous attempts to reach you to schedule you to discuss the results of your most recent ultrasound. The ultrasound reflected abnormal results. I have initiated a referral for you to have a consultation with our ENT department…”
It had been nearly a month and a half to finally get this message across. A month and a half where this lump kept growing, and I was growing with more uncertainty and fear than ever. To see an Otolaryngologist (ENT, AKA Ear Nose Throat doctor) meant that this was something serious. I followed the instructions on the letter and scheduled my appointment with the ENT. While talking to the clerk over the phone, she said, “Okay Mrs. Rocero, we have you scheduled for a biopsy on July 16, 2016 at 8 a.m.” Two things. A Biopsy (WTF?) and another month??!!
We, and when I say we, I am referring to my husband and I, as this affected both of us equally; we were on our fourth month of uncertainty and living with this news alone. We chose not to alarm our families and friends until we had some information. The longer we waited, it felt as if the lump was growing larger. Four months of waiting. Four months of jumping to conclusions and psyching myself out. Four months of living with something I knew nothing about.
Please check back in to follow my story. I’m not an amazing writer I know. This is merely a form of self-expression, self-help/therapy, and a way for me to work through what I have experienced. I ask that you join me in discussion and forum. If you have a battle to talk about don’t be afraid to leave a comment or email me at firstname.lastname@example.org
Much Love! – Nic