“Sometimes you just have to wait it out and let your body do what it’s designed to do. That’s why you’re called a patient.”
I can’t tell you the countless times I say that on a weekly, daily, and sometimes hourly basis to my patients. The tables turn when I find myself chanting the same phrase to myself on a minute-by-minute basis.
It all started in May 2014. The struggle. The fight. The adventure. My seemingly healthy, active, Fitbit-driven self started to have some weird stuff to deal with. Unbeknownst to me at the time, this adventure would continue on over the next year or so with new medical journeys I didn’t know were likely deeply connected to each other on a level most physicians don’t understand.
My asthma and allergy doctor, who has known me in and out since I was 14, said it best when I ran this whole saga by her recently: “You just don’t do anything simply and uncomplicatedly, do you? College swimmer, Duke graduate, top of your class at Emory, accomplished PT…now your body is trying to keep up with it all and it can’t.” Not a bad summary, Dr. Sheerin.
Sometimes, it’s hard being a girl
In May 2014 I was at a routine gynecological exam and my physician was concerned about an odd dry skin spot on my left nipple. She stopped her exam, took a breath, and asked me how long it had been there. No stranger to dry, chapped skin that forms under swimsuits and sports bras my whole life, I hadn’t even given it the time of day. Looked like the million other dry skin spots I’d seen before. She said it was either eczema or something else she was more concerned about. I asked her what. She paused, lowered her voice, and said “Paget’s Disease” then quickly changed the subject. I’d never heard of this. My colleague Blair was with me at my visit (shameless pelvic floor PT marketing, why not?) and out of the corner of my eye I could see her whip out her phone, undoubtedly looking it up. She said she was banking on eczema and put me on a gluten and corn free diet for 2 weeks to try and treat the inflammation holistically. If the spot did not improve, I was to call and ask about the next step.
Well that was a bit alarming. Blair’s google search told us it was a rare type of breast cancer found mainly in people over 50, but can be in people under 30. I was 30. I’m thinking to myself “hi Julie, welcome to 30. You have breast cancer.” Not what I wanted to hear or even think about. So I did my best to put that idea out of my mind (Hello, denial) and focus on the next challenge at hand: eliminating two huge staples from my diet.
This was my first take on an elimination diet. NOT FUN! (Foreshadowing to May 2015: Julie of the future laughs at Julie of the past. Just gluten and corn? Ha! That’s child’s play!). I had so much stress being on the diet that it probably made any eczema (or any other problems) get worse. It was an eye opener to say the least. I kicked and screamed and hated it.
Two weeks later, the spot was no better. I called the gynecologist and she said I needed to see a breast surgeon urgently. Color me alarmed. A…surgeon!? She referred me to one near her office. Terrified, I called and they were able to get me in that day. “What a relief,” I thought. “I’ll get some answers,” I thought. “Oh look, he is Harvard and Princeton educated. This is so relieving.”
I think I had some gluten and corn on the way to the appointment. Screw that idea. Two weeks of diet stress for nothing. BRING IT, CUPCAKES AND TACOS!
Well, my relief and joy quickly turned into frustration and annoyance. 2.5 hours in the waiting room and 30 seconds spent with the surgeon who didn’t even bother to ask a medical history, and I was told I needed a breast ultrasound. Oh, and the breast surgeon had a podiatrist shadowing him that day. I’m still trying to figure out what the podiatrist had to learn from observing my breasts (There are so many inappropriate ways to answer that question). I was told the hospital next door would call me to schedule. Four days later, and nobody called me to schedule. I called myself and got in the next day.
I had convinced myself that this was nothing, and showed up for the ultrasound very confident. I had to change into a pink robe and was surrounded by so many women who were in for routine mammograms. I felt so out of place, being at least 20 years younger than the nearest patient.
Mid-way through the ultrasound as Michael Jackson sang “Black and White” (ironic, those are the colors of ultrasound screens…) the ultrasound tech stopped what she was doing, took a deep breath, and started frantically clicking and typing on the mouse and keyboard. Having been no stranger to other ultrasounds, this was abnormal to me.
Sure enough, she said (also frantically), “Uh, I’ll be right back. I need to go ask the radiologist a question.”
I may not be THAT kind of healthcare provider, but I know for sure that is a sentence you NEVER want to hear from a radiology tech.
She came back in and said “your nipple is fine. But we found something else abnormal. A mass. Uh, It’s probably nothing to get TOO excited about. Uh, don’t let it ruin your long [Memorial Day] weekend. You just need to call your doctor very soon.”
Great. So you’re telling me this on a Friday afternoon after the doctor’s office is already closed for the day, right before a holiday weekend. Thanks for nothing Michael Jackson. This was not very Black and White.
Needless to say, it ruined my weekend. Evidently I wasn’t handling unknowns very well at the time.
I’ll save you the drama there. Fast forward to my next appointment an agonizing week later. Another 2.5 hour wait for my appointment, and the doctor came in reading the radiology report for the first time. He acted surprised and put off, as if he thought it must be wrong. He quickly “Palpated” my breast (as a fellow frequent palpater, let me tell you, it was not skilled palpation) and said “there’s nothing there that I feel. I guess we’ll do a biopsy then.” He told me it would be in the office, ultrasound guided, in the next 2 weeks.
(Update: so we’re on about week 5 now from when the gynecologist first found something weird—and the thing she found wasn’t actually the thing of concern.)
So what you’re telling me is you have an ultrasound in your office, AND you’re going to cut into me without being able to palpate what you’re taking biopsy from? This thing that is CLEARLY there (and huge) on an image?
That didn’t instill too much confidence in me. Not to mention I was put off that he clearly has an ultrasound in office yet outsourced me to get an ultrasound and pay hospital prices for it. And by the way: this office visit lasted a total of 1.5 minutes. I must have had a “WTF” look on my face because on his way out he put a hand on my shoulder and gave me an insincere, mocking “pity” face, then left the room. Well done man, you just lowered the bar for all physicians out there. I am sorry to my physician colleagues and friends who get their reputations ruined by people like that.
I scheduled the biopsy for 2 weeks later since surgeons go on vacation at inopportune times. I was furious, frustrated, terrified, and felt so gypped of the high quality care I model for others and seek for myself.
I got home, ripped off my shirt in front of the mirror, and palpated. Yep, there it was in all of its glory. Little nodule hanging out at 10 o’clock in my left breast. It felt hard and really mobile. I had no idea what that meant but Google told me it could be a good sign. I of course doubted it and read into it way too deeply (because Dr. Google will always make you do that, folks) and was convinced I had a rare form of breast cancer that is usually lethal in young people.
Bring on the tears.
I hadn’t cried much in all of this process, and oh boy, did I cry. I had no other way to give the emotions an outlet. Within that same bout of tears I found inspiration. I knew that I was so frustrated with this doctor and didn’t have to put up with that type of care. I wanted answers, and I wanted them more quickly than the 5+ weeks it was already taking to get them. So I thought maybe, just maybe, I could get better and quicker answers from someone else.
Dr. Google came to the rescue (for once). I actually read all the online reviews of the surgeon I was seeing and MAN—did he have some doozies in there. I know people only put the bad stuff up most of the time, but there was NOTHING good! I knew right then I had to fire this guy. But then what? Abandon ship? Give up on the path I’d already trodden?
That was the brave and most honorable thing to do. I’m not one to back down from a medical provider’s recommendations as I’m probably the most compliant patient out there. My life coach calls this “coachable.” I call it “rule follower.” Either way, you get the idea. So then I started crying because I felt like a quitter.
So first I vindicated myself by writing a very poignant Yelp review for this physician. Let’s just say I added to the huge bank of negative reviews. I briefly kicked myself for not doing my research on him ahead of time (beyond what his online bio said), but I was being compliant and going with the referral from my gynecologist. Fast forward: notified the gynecologist about my experience. She said she refers there because they get patients in so quickly and send notes to her promptly. She was completely unaware of the actual patient experience.
Another quick tear-soaked Google search led to a practice that was just down the street from my house. I watched the online video bios by the medical director of the practice and knew it was the right place when HE began HIS video with “Breast cancer and breast disorders are the single most anxiety-provoking health problem for women. We get that.” I was IN. How compassionate is that? Yeah yeah, it’s all great marketing (well done, Piedmont Hospital!) but this girl needed some compassion in that moment.
I scheduled an appointment for a few days later, and walked in to the very quiet, non-busy waiting room feeling scared but reassured. Why was I reassured? There were teddy bears on the couches, and fresh flowers throughout the waiting room. I saw my surgeon, Erin Bowman, walking a terrified-looking patient out with her arm around the patient’s shoulder and a smile on her face. The nurses wore cute and chic street clothes. It was so…personal feeling.
The nurse spent 15 minutes with me getting the whole story and reassuring me. The surgeon spent 20. 20 MINUTES! That’s a lot longer than 90 seconds! She did an in-office ultrasound (who woulda thunk it?) and told me yes, I needed a biopsy, and she had time to do it that day because she didn’t want me to have to wait for answers any longer.
WOW! I’ve won the lottery!
She left the room to tell her assistant, and I quickly called my office to cancel the rest of my patients.
She came back in with a half smile and a half frown. She said “the bad news is your insurance requires at least 3 days to pre-authorize this procedure. They will probably do it and we can take the chance, but I don’t want you to get a bill. The good news is I am so confident this is a fibroadenoma (benign growth) that I really don’t think we need to do a biopsy so urgently.”
I really appreciated her confidence though. It was the first time any physician had gone out on a limb, put on her big girl panties, and told me what she actually thought. Needless to say, while I was on edge for the next week until the biopsy, I felt so much better. She did the biopsy and let me watch on the screen the whole time, telling me what was going on. Yes, you realize I’m a really nerdy medical provider too. I know enough about everything to be dangerous to myself. It’s better to tell me the facts than to keep me in the dark.
Three agonizing days later, I got a voicemail with her excitedly telling me everything was completely fine, it wasn’t cancer, and I only had to follow up for monitoring every 6 months to make sure it didn’t grow so huge it would look like I had 3 boobs. Ok maybe she didn’t say that last part.
Hallelujah! So I thought.
Unfortunately the stress had really caught up to me in ways I didn’t realize it could. My menstrual cycles got thrown off so badly I also feared I was pregnant. I say “fear” because it was just not the right time for me. It’s in the plan, but this was terrible timing. I also started getting terribly itchy and infected eyes to the point I could not wear contacts. I had to wear my (very cute) new glasses. Unfortunately, all the stress led to a lot of jaw clenching, which, coupled with glasses wear, put a lot of tension and pressure right above and behind my ears. Cue irritation to the muscles there, lots of headaches and neck and jaw pain, and symptoms of trigeminal neuralgia (itching, burning, pain, numbness, and feeling uncoordinated all over my head, scalp, and face). Remember how my allergist said “You don’t do anything simply?” Yeah-good example.
I spent the next month trying to come down from the ledge, but was faced with an enormous increase in stress at work just when I didn’t need it to be increasing. Because of the eyes/headaches/jaw, I couldn’t do a lot of swimming (My best stress outlet) and it was way too hot in Atlanta to do much walking—which didn’t get my heart rate up high enough to de-stress anyway. So I did my best to keep it under control given the circumstances.
Read on to Chapter 2: The brain is the most mysterious and coolest thing ever for more on this story!