I am not an uneducated patient, not by a long shot. I’ve spent months at the prestigious Johns Hopkins Medical Center in Baltimore caring for an ill father, and before him at the same institution, an adored father-in-law with pancreatic cancer, and years, if not decades before those crises, in and out of hospitals with health issues of other family members and friends. I worked for a national cancer advocacy group where my job was to walk patients through their own journeys to find experts, to get needed tests and to help explain results to them. I worked with many clinicians at Hopkins, the National Institutes of Health, and other tertiary hospitals in the country in a professional capacity. In other words, I have connections and I know whom to call to get some answers if I need them. I know when to challenge my healthcare professionals and when to stand back and let them do their work.
And, yet.
Recently, I had a fairly routine CT scan to check for cardiac calcium build-up, given my family’s dire relationship with heart disease. My Internist thought it would be a good idea to have this specialized test as a precaution and predictor. As I always do (and you should, too), I requested to have a paper copy of the results, when they were ready, sent to my home, along with the copy they routinely send to the physician who ordered the test.
When the test results arrived in the mail one Saturday morning not long after the test was conducted, I was thrilled to see that I scored a big fat ZERO on my test – no calcium build-up, no lesions, no nothing. My arteries were clean as a whistle. Wahoo!
And, then.
In tiny, almost illegible handwriting in the notes section, scrawled at the bottom of the page were the words: “A 1.5 cm mass was detected in the medial left breast. Diagnostic mammogram and sonogram should follow.”
Being a Saturday morning, I had to wait until open of business on Monday morning to start what I already knew could be a very long journey. Trying to get through the next 48 hours was as difficult as trying to ignore a shard of glass lodged in my foot as I tried to walk forward. I myopically didn’t think about the fact that I didn’t yet know what this mass was. I also didn’t think about the fact that hundreds of thousands of women go through this in each year. (The American Cancer Society estimates that almost 250,000 women will be diagnosed with breast cancer in 2015. Think about that — a quarter of a million women…)
I did know a few things, though. I knew that waiting around wasn’t going to work for me. I am not good at compartmentalizing things — perhaps no one is in these situations — but, for the next two days, staying in bed with the blankets pulled over my head seemed the only way to stitch together the hours until Monday morning arrived when I could at least do something that felt useful. When 9 a.m. finally came, I opted not to make an appointment with my family doctor or my gynecologist, figuring all they would do was look at my test results and send me for further testing. Instead, I called my gynecologist’s office and asked to have an order written for a mammogram that I could pick up and hand carry to wherever I would have the tests done. They agreed to forego seeing me (although not the typical route) and wrote the orders after I faxed my paper copy of the test result to them. Knowing the orders were being written and would be waiting for me to pick up, I then moved on to calling a local radiology office where I had all of my previous mammograms and studies to schedule the test.
It was at that point that the road got a little bumpy.
Apparently, radiology offices have more business than they need and are in no hurry to re-arrange other patients’ appointments to accommodate a potential (and frantic) cancer patient. As one clinic told me, “all of our patients are frantic, ma’am, and all of them need their results, like, yesterday.” I learned that they wouldn’t do it even if I had already been diagnosed with cancer. The only way to get a mammogram and ultrasound on the spot, it seemed, was to convince my doctor that I needed to check into a hospital. Given the fact that they were more likely to admit me to the hospital for a psychiatric evaluation than they were to have a test that might determine whether I had cancer, even for reactive and irrational me, I could see that I probably wasn’t going to instill a lot of confidence in my decision making if I began yelling “wolf!” at this early stage in the game.
Instead, I spent the morning calling radiology office after office, pleading my case. This one wouldn’t be able to see me for three weeks. The next one would be closer to a month! Many others didn’t do 3D screening. I knew that because I just had a routine 3D mammogram as a part of my annual check-up, whatever this thing was inside me must be growing fast, and that was why I kept dialing.
No way in hell was I going to wait three weeks. As if I had any real choice here. As if I knew something that every single cancer patient, or potential patient, didn’t know.
I told one of the offices I called that had a lot of regional branches that I would travel to any lab they had that could fit me in — I’d even drive up to Philadelphia, three hours away, if I had to — I didn’t care, I wanted to have these tests within 24 hours.
Even then, they couldn’t find an opening.
Over the next three hours, I called as many other labs as I could find, and keep in mind, I wasn’t actually sick — I had no symptoms. I was not dealing with the effects of chemotherapy. I was not exhausted from retching into a toilet all night long or wrung out from drug-induced lethargy. I had the energy and wherewithal to make this my mission on this day.
Finally, I got lucky, pure and simple luck — I’m smart enough to know my persistence was no match for the system. And it was, in fact, that I simply got lucky. I was able to get an appointment at an office a good hour and a half from my home that had just had a cancellation. Small price to pay, of course — giving up a half day’s drive (and work) to get some answers. I had the luxury of a flexible job, as did my husband. I had gas in my car and the insurance to see any doctor on any day in any locale. Mostly, though, I didn’t think my family could endure me over the next few weeks of not knowing. I was as sweet as a rapid cat and as useful as a ball-point pen out of ink.
So, later that day, off my husband and I went to a bland medical building in one of those ubiquitous office parks. Once there, I spent almost an hour in the waiting room, quaking like a jelly mold while my husband’s attempt to talk about the weather was met with a scowl and reprimand about not making chit-chat at a time like this. You’d think I could have been nicer, not to tempt fate, but I obviously wasn’t at the point of with negotiating with fate.
They were running late, of course. It was a horrible 60 minute wait – something akin to waiting at the DMV for your number to be called, only with the added flavoring of white-hot fear.
Many of you know the feeling already. You have been through this, only worse. You waited that dreadful hour in a different waiting room, knowing you had cancer, but waiting to see whether it had compromised your lymph nodes, or your liver, or your brain. Perhaps, you waited patiently to hear what your options were. Or, whether you even had any options.
I get it — and I am embarrassed at how, in hindsight, I couldn’t empathize with you. It was, simply and selfishly, all about me.
As I sat in the dressing room waiting to be called in for the diagnostic test, I noticed that most of the other patients being seen that day were dismissed as soon as their tests were through. Goodbye, Mrs. Stanley, we’ll see you next year. Thanks again, Ms. Lewis, we’ll see you next year. On it went, my desire to wish myself I could trade places with them growing with each passing moment , as I sat, perched on that little bench in that little cubicle waiting to hear my name called.
Eventually, I began to notice that a few women, one or two perhaps during the time I was sitting there, were called into the “conference” room to chat with the radiologist. Mrs. Stevens, will you follow me? The radiologist would like to speak with you for a moment in the conference room. The news wasn’t good in there — I know this because, while I tried not to listen, for those women in whom something was found, I could feel their fear seeping through the doorway. It was palatable.
And then, it was my turn.
A humorless, but not unkind, technologist turned me this way and that, taking so many scans I should still be glowing. Directly following the 3D scan, I was sent back to my little dressing room, where I hoped, to get dressed and be dismissed, just like Mrs. Stanly and Ms. Lewis. Instead, they told me to stay in my gown in case further testing was needed. Thirty more minutes spent sitting on the bench waiting for some unknown clinician to read my scans – a reading that would determine the next few years of my life, no less – were more of the same. The fear I felt in the pit of my stomach was similar to taking a shot of strong whiskey. Except instead of the warm embrace of alcohol, a slow moving nausea began to settle in. I began texting my husband, frantically, who was sitting in the waiting room, leafing through the latest issue of Sports Illustrated. I married a pathological optimist, I should note. I once read about a funny tombstone inscription from a wife’s grave that said, “See, I told you I was sick!” Does plagiarism exist with tombstone inscriptions? I am totally stealing this if my husband doesn’t shape up and start worrying more. I swear I will. I told you I was irrational.
I was about to get up and ask if he could come back and sit with me, more so to make him put down the dang magazine and see what his beloved wife was dealing with back here in this coffin-sized dressing room where people go to die. Did I mention I was getting a bit hysterical?
Seeming to understand that they had pushed me to my limit, the technologist arrived at my curtained doorway to apologize and say that they would need to do a sonogram. And, after that, they said, the doctor would like to chat with me.
In the conference room.
And, under the heading of be careful what you wish for, my husband was called back to be with me. I am amazed at how these seemingly little things — calling a husband back, asking for more tests, making a patient wait, add to the drama like a well-crafted who-done-it mystery, each action building, analyzed, turned over, until arriving at what could only be my damn funeral. I mean, really. I was out of control.
What he saw, the balding doctor who had delivered life-changing news to any number of women on just that day alone, what he saw, he said, was simply, blissfully, scar tissue from a breast surgery I had years ago. I was free to go, he said, we’ll see you in a year, Ms. Scott.
And go, I did. As soon as I got home, I changed into my bathing suit and went for a good long swim – what better way to celebrate health?
With apologies, heartfelt to my core, to my friends and loved ones who received the worst possible news in a non-descript conference room on a different day. I know my 72-hour ordeal was nothing, not even close, to the ongoing fight they are waging.
I can only say this was what many of them already know: our health care system doesn’t make it easy on patients. The nurses and doctors I know are the most caring souls in the world, but they can only do so much. We, as patients, need to stand up for ourselves. I am still reeling over how much I had to push back against a system that doesn’t want you to do that, isn’t prepared for it, and frankly, bristles at the push back. But, you know what? I could push back. I could go to a clinic wherever the hell I wanted because I had the healthcare insurance to do so. And, interestingly enough, the most comforting part of this (and I dwelled on this a lot over those few days) was that I knew if the news was bad, my family wasn’t going to lose its home or life savings to try to fight this thing. It didn’t make my experience less scary, but it did make it less stressful.
One more thing. Get your yearly mammogram. At the end of the day, I knew whatever I may have had was caught early since I’ve had regular scans since I turned 30. Do you have that comfort? This is not the worst pain you will ever feel. Trust me. This is nothing compared to looking into your mother’s eyes and telling her she might outlive you. Or your son’s eyes and telling him you want to spend as much time with him this summer, because you might not be around next year. I think you’ll agree, having your boobs squished for a few seconds is a gift, not only to yourself, but to your family.
Christine Anne Scott 