Diagnosis — Part 1: I always knew I had cancer.
When I got my diagnosis, I was equal parts shocked and validated.
Statistically, the odds of a 30 year old woman being diagnosed with breast cancer are low. So, when I noticed a lump in early 2015, it was statistically more likely to be something benign.
Even today, after surgery and chemo, I still catch myself thinking, I can’t believe it.
This all goes to show that no amount of pre-emptive worry — my soothing hypochondriac myth of choice — can protect you. My brain has been terrorizing itself for decades by imagining the worst and then “remembering” that if I’m worrying about it now, it probably won’t happen. What are the chances?
Introducing The Lump
I’ve been semi-diligent about doing self-exams because I’m a public health evangelist and because my mother was diagnosed with breast cancer. So, I’d felt this “boob lump” before. Young women tend to have more dense breast tissue, and more hormone-related, non-cancer lumps. This is what I would tell myself when I would stay awake at night, convinced that I had breast cancer — thinking about all the plastic bottles I’d reused and calculating nonsense statistical models. My “Think about it and it won’t happen,” theory wasn’t taught in biostatistics class, but I made it work.
My late night cancer worries were only interludes between my other imagined crises, which confirms that I’m not psychic, just a hypochondriac. Eventually, I would force myself to believe “the most likely answer is probably the right one,” and go to sleep.
At my annual lady exam in June 2015, I pointed the lump out to my provider. It was easy to feel — about the size of a grape on the side of my left breast. She felt it, and then moved to the right side. She had me feel them both.
“I feel what you feel, but on the right side you have a similar nodule,” she explained. “As long as they are symmetrical like this, it is likely normal tissue. Keep doing your self exams.” Since my mother was older when she was diagnosed and is the only person in my family with cancer, there was no reason to suspect it was genetic. All these things are true generally, and are usually true for young women.
I spent fewer nights worrying about The Lump, which gave me more time to worry about stuff like… wedding planning! That November, my boyfriend DeAndrae proposed.
I did my monthly breast exams, reassuring myself that the symmetry I felt was “OK lumpy.” I even remember nervously joking about The Lump. (Another axiom of neurosis is that if you speak about your fears, they are even less likely to be true, because what are the chances you have cancer and are a psychic? The opposite is true for ghosts.)
I began to noticed that I couldn’t feel any lumps in the right breast, but The Lump was still there. It didn’t seem bigger, but more pronounced. I noticed my boobs — never much to write home about, in my opinion, looked “off.” The Lump was visible.
Hmm.. never seen that before. Cancer. I have cancer. It’s probably not cancer. It is likely not cancer. What am I going to do with cancer? It is statistically unlikely to be cancer.
In June, it was time for my lady visit. I tried hard to sound casual when I mentioned the changes I’d noticed.
I looked up at the ceiling during the breast exam part of the visit.
“Hmm,” she paused, after examining and comparing both sides. The psychic hypochondriac in my brain was waiting with bated breath. “Well, it is most likely not cancerous, but since it is still here I want to send you for an ultrasound to be sure.”
I’m sorry, what? No. These are just my young lumpy boobs doing their normal lumpy thing! Let’s not overreact here.
“Ok, sure,” I said. I was hoping that came off as casual confidence, like I believed we were just being cautious.
I was anxious. Actually, I am anxious, that is just who I am. I was very anxious.
I only told De and a few close friends at first. I figured I’d tell other people once I’d gotten the all-clear. It would just be another story for my “patient experience” research for work.
In two days, I was in to see the radiologist. I don’t know if I could have handled much longer.
Going to the radiologist
At 30, I was still a decade out from having my first mammogram, so going to the radiologist was a new experience.
They had dressing room-style changing spaces, low lighting and cookies. As a person who gets paid to think about healthcare experiences, I noticed that they had the woman-focused ambiance down.
After I’d changed into my gown, I turned around and saw a familiar face. I knew Donna through church because she’s a wonderful singer and because she’s married to one of my pastors, Matt, who, coincidentally, was my wedding officiant. Small world!
After some small talk, she asked if I wanted someone else to be my tech. I said no, because I figured if you’re in the business of boobs, it isn’t a big deal to you. I’ve never been super comfortable with my actual boobs, but theoretical boobs were just another body part — except better because they sometimes sustain new life.
Also, you don’t have to be around Donna long before you realize that she radiates warmth and kindness. Radiology pun aside — she’s the kind of person you want to be around in hopes that you’ll soak in the warmth and be more like her.
I don’t know if God works this way, but I thought, Thank you, God, for making me a little less alone today. Somebody who knows me knows that I’m here and knows that I’m scared.
The ultrasound part was pretty easy. I tried watch the screen to see if I could make sense of the swirls and shadows. Occasionally, Donna would take screenshot-type photos. We chatted, and I was grateful for her. I imagine all of her patients feel this way, not just the ones she knows.
After the ultrasound, I went to another room and got a mammogram. The hardest part was contorting my body into the right position and angle. I was surprised that it wasn’t as bad as I’d expected.
Later, the radiologist came in to talk with me. She was straightforward in explaining what they saw. The Lump was a brighter smudge on the images. I didn’t know if that was a good thing or a bad thing.
I can’t remember her exact words when she told me I’d need a biopsy, but I remember asking “Well, what else besides cancer could it be?”
I could tell she thought it was most likely cancer, but she couldn’t say that for sure.
When I got home, I googled every possible explanation for what it could be other than cancer. Statistically, it wasn’t cancer.
I went to school for public health. I love statistics and risk ratios and confidence intervals. Sure, someone is the in .02%, but that’s not me. I’m a 99 percenter! Just a regular gal, with regular old lumpy boobs!
I kept thinking back to the doctor’s face. All those nights awake in bed — I was wrong about having ebola, but I was right about having cancer.
De, on the other hand, refused to believe my “I can read the doctor’s face” theory. He wanted me to wait for the results, but then he would hug me whenever I burst into tears and tell me that we would get through it together.
Hey man, I thought — you’re supposed to be the positive one in denial right now. What do you mean “get through it”? But you can’t really be mad at the man whose t-shirt you just ruined with mascara, so I dropped it.
Waiting and Traveling
The next day, De, my mom and I drove six hours to Alabama to spend time with his family for his birthday on July 4. This is a good time to tell you that I do not keep (my) secrets well.
I’d wanted desperately to tell my parents. I wanted them to tell me that it was nothing and ease my fears. It felt kind not to tell them. Best case scenario, I was saving them from a few days of worry and worst case scenario, I was giving them a few days of their life when they wouldn’t have to think about their only daughter possibly dying of cancer.
In their place, I talked feverishly to my grandma Christine. In my head. She passed away in February, but I figured if she was paying attention to what was going on down here then she’d want to soothe my fears. She had been on my very short list of “Best Humans” and “People I’m Confident Love Me.” Also, she was a nurse, so I figured I didn’t need to explain all the medical stuff.
Christine — Where are you? I need you. What am I going to do? How is this possible? I need you. I need you. I need you.
On the trip, I was afraid that if I talked too much at all I would give myself away. I wanted to pretend nothing was wrong, because until I knew what was actually wrong, it was the worst case scenario. I didn’t want to put “Worst Case Scenario” on my parents or De’s family.
Whenever I would start feeling too scared or too alone, I would confess in text to a friend, and I would momentarily feel better. I know this is pretty selfish, but that old saying about sharing burdens is legit. Try it.
We had a nice visit, and my mom got to meet a lot of his extended family that she hadn’t before. When De and I were alone, I would take off the “Everything’s normal” mask and reveal my “I have cancer. I am going to die. And I am so very alone.” face.
I don’t think De knew what to do with me. He did not want to give into my pessimism, but he knew that trying to cheer me up wasn’t the answer.
I was a really fun travel companion.
I felt guilty for not being able to deliver a great birthday for De, but I was relieved to get home where I could throw the mask away.
I knew I had cancer, and I was pretty sure I was going to die soon. I’d seen what my mom had gone through, and I felt sorry for myself. I felt sorry for her. I thought about the time my mom knew she had cancer, but kept having her appointments canceled for weather while she was waiting for the biopsy results. Both times my mom was diagnosed, she hadn’t told me until she knew the facts, and now that I was going through it too I was wrecked thinking about her feeling this way.
Every moment was filled with a worry or painful memory. I had cancer. I was going to die. I was going to ruin everyone’s life. This was supposed to be some of the happiest time in my life. I wasn’t going to do all the things I wanted to do. And everything was ruined. And I didn’t have Christine anymore, and I kept searching for her in my mind and I couldn’t find her.
And I felt so, so, so, alone.
The day after we got home, De and I went in for my core needle biopsy. He and all the other husbands sat in the waiting room holding purses and watching HGTV. After some confusion, the receptionist told me that my appointment wasn’t until the following day.
I don’t know if I looked like I might cry or if she’s just in the business of working with people who are awaiting important news, but she worked to get me on the schedule that morning. [As a “secret shopper,” I noted that this was a good example of human-centered care.]
When I went back, I once again found myself open-gown topless and alone, staring up at the ceiling waiting. “Observation” is a tool I use to cope with stress. I wouldn’t say all the observations are very insightful. There were two circular fixtures on the ceiling and I wondered if anyone else had ever stared up at these and thought they looked like boobs.
I talked at Christine in my head — Can you believe this? Where are you? If something happens to me, please take care of Mom. I bet you would laugh at these ceiling boobs too. Are you with Helen? I need your combined grandmother super powers right now. I need you guys to make me more like you — two tough bitches.
As a person who hates needles, a “core needle biopsy” sounded a little bit like a nightmare. They numb the area first (with an injection), and then use the ultrasound image to guide the needle in to grab a sample of the suspicious tissue.
First, you should know that your boobs get numb a lot faster than your teeth. I don’t know why you need to know that, but I thought it was interesting. Within a minute or so, they were clicking the biopsy needle on my skin. It sounded like a staple gun, but it didn’t feel like anything.
They bandaged me up and sent me on my way, with ice packs tucked in my bra. I took breaks from staring off into space to google any and all possible explanations besides cancer. The office told me I’d probably have the results by the end of the week or the following Monday at the latest.
I tried to occupy myself with work. I tucked extra boob ice packs in my lunchbox. I imagined both scenarios — how relieved I’d feel when I got the call that it wasn’t cancer, and how terrified I’d feel when I got the call that it was.
On July 7, the office called when I was wrapping up a meeting at work.
“Elizabeth, your biopsy results came back, and it is cancer.”
I don’t know how I expected the nurse to sound when delivering this news, but she was just the right amount of straight forward and empathetic. She told me it was invasive ductal carcinoma. My hands were shaking as I wrote out random words she was saying. I didn’t know what I’d remember later or what would be important.
Uh huh. Uh huh. Ok. Uh huh. I tried my best to maintain the composure of a person who hadn’t just been told they had cancer.
I texted De, my mom and dad. “Hey — Can you call me when you get a chance?” De was out of town for work. My mom was working, but my dad was off. I didn’t give him a chance to get my text. I walked to my car, and when he answered, the flood gates opened.
I blubbered through what the nurse had told me — I have invasive ductal carcinoma. It sounds bad, but it is the most common kind of breast cancer. I won’t know what kind it is, or what my prognosis is until they get the pathology report back.
He was upset, and he is the kind of person who doesn’t get upset a lot. Or at least, not outwardly. It was a relief to share my grief with someone who’d had 30 years of the same hopes and dreams that I’d had for myself.
After we got off the phone, I talked to my mom. “You are going to get through this,” she said. “Are you at home? I’m leaving work. I’ll be there soon.”
I went back to the office to collect my stuff, and I tried to look like someone who hadn’t just bawled two week’s worth of tears in 10 minutes in their car. I tried to wait for my boss to get out of a meeting, but at the risk of freaking out the intern who was sitting at the desk beside me, I decided it was best to pack it up and go home.
I emailed my boss, I received some bad health news today, and so I’m going to work from home. Please call or email if you want more information. I know it is awkward, but I wanted to be honest without dropping the C-Bomb via email.
When my mom got to my house, I could tell she had been crying but she wasn’t a mess like I had been when she told me she had cancer. “We are going to get through this,” she said again. “You are going to be OK.”
De called, and I told him what the nurse had said. I didn’t want to freak him out while he was traveling, so I tried to assure him that I was going to be OK until he got home. My mom stayed with me, but the details of that time are a little hazy. My brain was in survival mode.
The next day, I had an all-day training. I didn’t have to go into the office and pretend to be normal. I was grateful for this “buffer” day. None of these people in the class knew me, so I could be as sullen and weird as I felt!