The Backstory

I’m going to start at the very, very beginning:

In early November, 2011, I went to the doctor because I had a bad cough. I thought I had bronchitis, which I’ve had many times in the past. Upon examination, the doctor heard decreased breath sounds on one side, but wasn’t too concerned, because I didn’t have a fever or any other symptoms. She sent me home with antibiotics, and eventually the cough went away.

The abdominal pain started on the day after Thanksgiving, 2011. It felt like heartburn. Of course, I figured I’d just eaten too much pie, and that it was no big deal.

In early December, I went out on the road for a 3-week cross country tour, to promote a new album (I’m a musician by trade). The abdominal pain was coming and going at that point. It would disappear for a few days, and then come back. Sometimes it felt like heartburn, sometimes it felt like gas pain, or constipation. I acquired a medicine chest full of over-the-counter remedies, in an effort to deal with this pain, which was more of a nuisance than anything else. Only on one occasion was it ever severe enough that I thought something more serious might be going on. I thought that maybe I was getting an ulcer. I had been out on the road solidly for 5 years. I didn’t sleep enough, and had eaten my share of convenience store junk, so I figured the lifestyle was catching up with me. I resolved to deal with it when I got home from tour at the end of December.

I got home on December 23rd. The next day, I made an appointment for the first week of January, 2012 to see my GP. I didn’t feel that a little gas constituted an emergency, so I felt comfortable waiting until their next available appointment.

My boyfriend and I had plans to spend the holidays with his family, and then travel for New Years. Our departure date was December 28th, 2011, and the abdominal pain woke me up at 6 o’clock that morning. It wasn’t any worse, and I wasn’t worried, but I was annoyed. Every day, I had told myself that tomorrow the pain would be gone, but here I was. It had been a month, and that stupid, annoying abdominal pain was STILL there. I knew I didn’t want to be dealing with it while I was on vacation so I decided that I was going to go take care of it once and for all, right then. Forget about the doctor appointment that I had scheduled for the next week!

I threw some clothes on, poked my head in the door of my Mom’s bedroom, and told her that I was heading over to the ER at our local community hospital, that I didn’t need her to go with me, and that I’d be back in time to drive her to the airport (she was scheduled to travel that day as well). I hopped in the car, and made the 5 minute drive. I parked in a spot that became “permit” parking at 9am, because I was sure I’d be out of there long before that, with a prescription to treat whatever minor thing was ailing me.

The physician assistant took my history, and palpated my abdomen. She didn’t feel anything, and I didn’t have any other symptoms. She told me that given this, she’d think twice about putting me through a CT scan (I’d have to drink a lot of contrast, and that the whole process would take a while), but that she was going to order one anyway, “just to see what’s going on in there”. They started an IV, I slammed back an entire bottle of contrast, and headed off to get scanned.

About a half hour later, the PA walked into my cubicle and said “You’re going to need to follow up with your regular doctor, you have a mass in your pelvis”.

I understood the words, but they didn’t make sense to me. I had a fibroid? Huh? Nowadays, I say those words to myself sometimes, just in an effort to snuggle up to my emotions a little closer. Doing that elicits the sense memory of what it felt like to hear those words for the first time. It wasn’t fear. It was abject, earnest confusion that literally made my head swim, and made the space around me feel like it was shrinking. I asked her what that meant. She said that all she could tell at that point was that “it’s big and it’s there”. The young, solemn-faced nurse who accompanied her said to me kindly: “I’m sure this is a lot to take in”. I remember wanting to ask her what exactly did she think I needed to take in? Surely, whatever this was, it was benign. No way was this cancer. I was way to busy for cancer.

Of course, since I made the brilliant decision to drive myself to the ER, I was alone when I got the news. I made a bunch of calls: to my mother, who was at the airport by now (I didn’t make it back in time to drive her) about to get on a plane to go overseas, my boyfriend, and my boyfriend’s parents. Everybody converged on the ER, and I was released, as there was no reason to keep me there. The radiologist on call made me an appointment for the next day to meet with a Gynecologic Oncology Surgeon in the area. It was a surreal afternoon. We cancelled our travel plans, and all hung out at my mom’s house. It felt like being at a party, waiting for the guest of honor to arrive or, in this case, the Boogeyman. My boyfriend and I named my tumor “Arnie”.

The next day, I sat in a doctor’s exam room, and was told that it was very, very unlikely that this was anything BUT cancer. That said, there would be no definitive diagnosis until after I’d had surgery to remove the mass. Additionally, the scan showed that I had fluid around my lungs. I’m pretty sure that the fluid was already there during that first doctor visit that I had in November, and that’s why she heard decreased breath sounds.

I had pre-op blood work, and my first (of many) “fluid taps”, or Thoracenteses, where they stick a needle-guided catheter through your back and into the space around your lung. The pinkish fluid drains into clear bottles. The young, fairly attractive radiologist, who performed the procedure, told me that the fluid was likely there as a result of the cancer. His calm detachment was as piercing as the needle, and I found it unsettling. Did he think he was talking to someone so full of cancer, that it had morphed into fluid around distal organs? I was still in denial, and I didn’t appreciate being made to feel like a bad statistic.

I went for a second opinion at Mercy Medical Center in Baltimore, Maryland. On January 2nd, 2012, I had my first consult with the man who would become my surgeon. That was the day that my denial was forced out, and reality was given the space it needed to settle in, and stretch itself into all of my creases. I finally understood, after that second and final consult, that I was in big trouble.

Because I have the BRCA gene mutation, I’d had a yearly pelvic ultrasound in April, 2011, which came back negative. 8 months later, I had what would turn out to be Stage 4 cancer.

I’ll tell you about what happened next in another post…

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