The phone call thoroughly surprised me.
“This is [insert name of world-renowned hospital and heathcare system here]. You were just in for a tomogram yesterday and we need to schedule a follow-up diagnostic image right away.”
This was the scheduling center calling me.
“I beg your pardon? Wh-what? Can you tell me what they saw on my image that you need me to come in right away?” The lump in my throat catches at the end of the sentence.
“No, I’m sorry you need to talk to your practitioner about that.”
“Well, why didn’t she call me first? Why am I hearing from the scheduling office first?”
“I’m sorry ma’am. You’ll have to talk to your practitioner about that.”
Huh. That’s not exactly the way I would have liked that conversation to go. As instructed, I call my doctor’s office and end up talking to her nurse. She confirms that my tomogram revealed something different than the last regular mammogram I had. They want to schedule me for a diagnostic imaging to confirm what was seen in the most recent image. I now have an appointment two days later to have that done.
A tomogram, for those who don’t know, is a 3D version of a mammogram. It’s a relatively new thing, and I agreed to have it done instead of the conventional mammogram even though I may get billed out of pocket for it. It’s essentially the same procedure, just longer. AWESOME. New! Improved! More pain, more radiation! Woo hoo!
Yep, you’re still getting your individual breasts slammed between two glass plates, horizontally and then vertically, and when you think it can’t be crushed anymore, the radiology tech tightens the plates that much more. The difference is, rather than getting one x-ray of the breast, the camera moves in an arc, stops, and takes an individual picture, again and again, from eight or so different angles. You’re getting zapped more and you hold each of those positions maybe 20-30 seconds longer in total. It’s hard to know for sure since time stands still while it’s happening.
Those of you who remember the first time you saw “The Matrix” and the scene where Neo bends backward to avoid getting shot by the spray of bullets, it’s a little like that. The movie director had cameras positioned from several different angles getting the same image so they could freeze Keanu Reeves’ position and then rotate the camera 90 some degrees to show him in exactly that same spot and position but from a different angle. This is essentially a tomogram. It begs the question whether the tomogram is medical technology inspired by “The Matrix”. Really: inquiring minds want to know.
Anyway, so there you are on your tippy toes, wincing from the pain of getting crushed, holding your breath and holding still for those 20 seconds longer while the camera pans and takes its various images. Four times.
F-O-U-R. Horizontally and vertically. For each breast.
I know those of you in the breast health field are face-palming right about now. Honestly, I don’t say any of this to discourage women from getting it done. Oh no. I am dead serious about that. I would still encourage women to do all they can for their breast health because early detection is oh-so critical.
Besides, we’re women. We can handle it. We handle childbirth. We handle discrimination and inequality. We can handle this. For reals.
However, I promise that if you gently placed a male doctor’s flaccid penis in a mammogram machine and crushed it to the degree you do a woman’s breast, the medical profession would design a better diagnostic tool for women than the mammogram, in a heartbeat.
Mmmmm hmm. You have to imagine me snapping my fingers, left and right just now, like a bad-ass.
I joked around with the radiology tech while the whole thing was going on and thanked her when we were done. I told her that I’m pretty sure no one ever thanks her. She belly-laughed and admitted that it was absolutely true. Nobody gives her the love. And she thanked me profusely for making her day.
She deserves the love. Anybody who helps me with my medical care deserves the love.
I show up two days later for my diagnostic imaging. Turns out they want to do an ultrasound first and then they’ll know immediately whether they need to do second mammogram. Oooo-kay.
Laying down on the gurney reminds me of the ultrasounds I had done while pregnant and the ones I’ve had done on my thyroid. Mostly happy occasions with a slightly scary one. This one was more like the latter.
I turn my head and behold, I can see the ultrasound monitor. It always surprises me that this is one of the more common non-invasive procedures they use to look inside of you because the image is so abstract, like a bad TV signal in the early 70s. Featured in the middle of the grainy black and white image is a white, almond-shaped spot that looks different than the surrounding tissue. Even I can see that. It hurts while they rub the wand over my breast and hold it in that very spot, even though they use the lubricating gel. The pain concerns me, but the almond-shaped spot is what concerns them.
The radiologist breezes into the room, looks at the image, and tells that she recommends a breast biopsy. The news takes my breath away.
Wait….what? OMG, is age 50 when shit hits the fan? Wait, wait, wait, wait….what?
It’s moments like this when so many thoughts run through my head I can’t sort them out let alone say them out loud. I’m not shy but I am an introvert. All the words inside my head, all those thoughts, stay there. My breathing becomes shallow. Maybe my breathing is always shallow but times like this, I notice it.
The radiologist then tells me that this lump is likely not cancer but they want to rule it out. She tells me they need to wait a week to do it, and how to prepare, where to show up, etc. Sign here… These are all logical next steps. She asks me if I have any questions and I am mute. I shake my head no. I can’t think of any. The immediate, logistical ones were answered. The emotional ones are trapped inside of me, like someone stuffed a sock in my mouth.
Over the next 24 hours, I grow increasingly alarmed. After all, I have noticed two lumps (who knows, maybe it’s just one super bumpy one) in that same vicinity for years now and have always mentioned them in my annual practitioner exams. A few years ago during my own breast exam this spot (spots?) was so tender and felt much more pronounced than before that it prompted me to call my doctor’s office. So began the process for a mid-year diagnostic mammogram which revealed nothing and yet another consultation about my fibrocystic breast tissue and how sensitive it is to caffeine, stress, and hormonal changes. I know the first two of the three are shorthand for my life.
I’m told the more I share my anxiety with the world, the more normal that makes you all feel. You’re welcome.
Laying on the gurney at that moment, I calculate that this is my third breast imaging since I raised my concern two years ago, and only now they’re seeing something worth examining? If it’s problematic, hasn’t it been problematic for years now? Couldn’t this have been prevented? Yes, the radiologist says that the newer technology of a tomogram reveals more questionable spots which means more biopsies to investigate them properly. Many of them turn out benign which is both good and bad. Better safe than sorry. I can’t argue with that logic.
But what if this is a different spot than what I’ve been noticing? What if this is something new but in the same area? How do they know they found what they were looking for? Was it just one spot or was there a possibility of a few? Why isn’t there a conversation going on with me about what I have been feeling and what they now see on the images? Why can’t I see the actual mammogram images so I can tell them about what I’ve been feeling? Don’t I know my own breasts better than they do?
See, years ago my doctor explained that I have fibrocystic tissue so my breasts naturally feel lumpy. We talked about how underwire bras can irritate the breasts, especially along the breast wall. Since my left is bigger than the right, the underwire on the cleavage side of my right cup tends to poke me on the right, in the same questionable spot.
Or it is possible this is the result of injury? Over the year, all three kids climb over me into bed to snuggle, and I can’t count how many times someone trips and nails me in the chest. It always hurts, in the same place. I don’t want to think they caused it, but maybe they helped me notice it more. I mean, is that a possibility?
Can somebody connect the dots for me? What is GOING ON and why now? I don’t feel anything different! This was supposed to be my normal annual screening, nothing more. Why is this happening?
Basically, I’m shocked and bothered the entire day I get the order for the biopsy. I sleep much of the weekend. I have a whole freaking week to wait to have it done and then almost a whole ‘nother week before I get results. Freaking awesome.
I call my sisters that evening and get different reactions. One tells me not to freak out. Uh, yeah. Too late. The other tries to reassure me that they’re being extra cautious and that women my age have biopsies that turn out negative plus the whole spiel about how today’s improved technology produces better images that also mean more biopsies that turn out to be nothing. Uh huh, except this is ME we’re talking about. They both have backgrounds in the medical field so I know to trust what they say. It just doesn’t penetrate the wall of fear I already built. Baby, that thing was erected in seconds.
That evening I asked my friends on Facebook to pray for me without really sharing why. This story is the why behind that request, and I thank all of you who did.
I tell a few of my immediate coworkers the next week and for whatever reason the conversation is more reassuring. I can’t tell if this is because they’re repeating what I was already told or they just don’t know how to feed my anxiety. One reacts by saying she is certain I am healthy and fine. The other says she’s gone through the same process, it turned out negative, and it will be ok. Yes, the news is a shock but chances are it really is a false positive.
I look up the stats. Two-thirds of all biopsies are non-cancerous. The odds are in my favor.
Strangely I am pretty upbeat throughout the rest of the week until Friday when it’s time for the appointment, at which point it really hits me on the drive in. My sister and a coworker kindly offered to go with me so I wouldn’t be alone but I poo-pooed it, and insisted I was fine to go alone. My husband misunderstood and thought the procedure was the following week. Nevertheless, I am by myself on the drive in mainly because this whole incident feels so out-of-body (am I in denial?) and they told I could drive home myself afterward. Yep, I’m a practical person, completely ignoring the emotional support I really do need. This will become obvious to you before long.
Anyway, the final turn onto the road where the breast center is located is when I can feel my heart racing. I catch myself repeatedly holding my breath. I wonder if they’ll take my blood pressure first. Is this a necessary part of the protocol? Probably not. Should they? Should they do something to monitor the stress level of the individual? Probably. But no. They don’t check that. I continue the deep breathing from the diaphragm whenever I think of it.
The whole procedure is over in an hour. The tech used the ultrasound to guide where to make the incision. A new radiologist comes into the room, introduces herself and explains that she will numb the area. Sure, the needle poke into my breast burns a teeny bit at first but it isn’t bad. Yes, my mind raced over whether I would be allergic to it since I am allergic to contrast dye, but no…..I’m watching the numbing fluid enter my breast on the ultrasound monitor and nothing is happening. It’s a little strange to see something I don’t feel. Then she inserts the hollow biopsy needle three separate times and presses the button for each. It makes a loud click and you can see it shoot into (through?) the white spot to collect a tissue sample. I see it and hear it but I don’t feel it. So weird and yet so cool. I wonder if I’ll suddenly have a panic attack watching the procedure even though mentally I don’t think I will. But you never know… And……I don’t. Ok, so far so good.
Then she goes in a fourth time to permanently place a tiny little titanium “clip” to mark the place where she sampled. It will show up on all future images but it isn’t big enough to set off the airport security monitors. I chuckle and call it my bling. I tell her it’s like she’s planting the flag on the moon, going where no man had gone before. Now she laughed and said she hadn’t heard that one before.
One butterfly bandage later and I’m ready for home. I don’t feel too sore, but I’m a little black and blue.
She tells me it will take 2-5 business days to get the results. She explained that she isn’t working the following Wednesday and she knows how people’s minds race, so if she had the results Tuesday, she’d call me even if it meant calling into the evening. She almost scoffed at the idea that I wouldn’t have results on Tuesday. But there I was confirming aloud that I shouldn’t freak out if I don’t hear from her until Friday.
At this point I feel like it’s a 50/50 shot for me. It defies all logic of what I had been told, but that’s where my head was.
And where is Tom Petty when you need him? “The waaaaaaaaiiiiiiting is the haaaarrrrrrrrd-eeeeeeest paaart.” Seriously, he had to go and die this month?
You know how when you’re trying to get pregnant and you can’t, all you see are pregnant women everywhere? October is breast cancer awareness month and all, but still. The Friday night of my biopsy, we hit up the high school football game and oh, I don’t know, count ’em: 100 students in the spirit section are wearing breast cancer awareness pink shirts. Oh yeah. And yet I’m trying to keep my mouth shut about my ordeal. I desperately want to talk about this but I really should not talk about this. No sense alarming people, myself included. I really, really don’t want to be a drama queen. Really.
Besides, my husband and I decided not to tell the kids what was going on until there was something truly substantive to tell them. If anyone ought to know, they should first, but that’s not what we did. Collectively they’re a little too young to understand not to mention how my youngest is very protective of me and he would worry. Yet part of me thinks that’s a cop-out because they are not that young. And we as a family have been discussing health as a family value – wait for it – during this entire month of October during our family meetings. Timing is everything.
Serendipitously two days later, my middle-child pre-teen daughter asks me how you know whether you have breast cancer. Little girl say whaaaaa? Did I hear that correctly? Did she pick up on it somehow? Are they wondering? Am I doing a bad job of hiding what’s going on?
Obviously if this essay is any indication, I had a serious need to talk about this….and I wanted to blurt it out right then and there but I kept it inside for several more excruciating days. I mean, I answered her question as thoroughly as I could but of all things she would ask me, that random question arose. How does that happen?
The handful of people I did tell start pinging me Tuesday, asking if I heard. No, which meant I knew it’d be two more days before I had news. [Insert sad face emoji.]
I convinced myself the phone would ring Thursday at 9 am, despite how many other patients the radiologist saw who were likewise awaiting results. No, this is ME, and surely my phone will ring Thursday at 9 am sharp.
At 3:30 pm Thursday I finally break down and call my practitioner first, even though I know the radiologist said she would be the one to contact me directly. The nurse gets back on the line with me and confirms that the radiologist is the one who would give me the results, and that they don’t have them yet.
She said she would call the radiology department on my behalf, and ends our conversation with, “Hey, don’t worry about this, ok? I’m telling you: you don’t have to worry. It’s going to be ok.” Part of me thinks she has my results right in front of her, and she can’t be the one to say so. The other part of me thinks she’s being the compassionate healthcare provider I need. Yet another part of me thinks no matter what the results, breast cancer is treatable when it’s caught early, and that’s why she’s trying to reassure me.
My husband texts me. “What do you think?”
I respond, “I’m thinking about how one of my next conversations will be with a surgeon and how long chemotherapy will be, and whether I will be on disability for it. That’s what I’m thinking.”
- Yep, what would surgery be like? I’ve never been entirely knocked out. Will I do ok with anesthesia? Will the sutures hurt? Will I wake up and find they took the whole breast? What would recovery be like over the holidays? How long would chemotherapy be?
- I’m the breadwinner, so what percentage of my salary gets paid out again while I’m on long-term leave? Can we do this? Thank God I have disability insurance through work. Do you know how many people don’t have that?
- Holy criminy, we just agreed to send our oldest to China on a school trip that maybe we can’t afford now. Will my daughter have to stop dance? If I’m too weak to take her to competitions, who will?
- OMG, I already have bad hair and now I’m going to lose it? Suck it up, Denise. You know people including a good friend who went through chemo just last year, don’t fall apart. It can be done. She did it…they did it. Don’t wimp out when they didn’t.
- OMG, my body is a 50-year-old game of Jenga and is cancer or chemo the block that will knock the whole thing down?
- Great, yet another “pre-existing” condition, I am so f—ed. Why is our health care system so broken?
- OMG, this lump is six inches away from the spot on my chest where I had a teeny tiny melanoma 25 years ago. Are they related? There is just NO WAY it metastasized after all these years….they excised all of the skin cancer the first time! But maybe they really did find something I didn’t feel, and it happens to be in the same general area.
- How do I tell people this news? Do I call some or would I just broadcast, “I have breast cancer” on Facebook with the classic mic drop? Would I blog about this? Oh, hell yeah, I’m blogging about this. I don’t know where this fits in the “Live Laugh Love” part of the blog theme, but hey…I’ll make it work somehow.
- One in eight women get breast cancer but I know so few who have. I know there are more follow-ups due to the better imaging that is now done, leading to more biopsies that turn out to be false alarms. But what if my turn is up? Will I be like Julia Louis-Deyfus, strong and confident in the face of this disease? Be a spokesperson and strong advocate for breast health? I sure as hell don’t feel strong at the moment. But I can do this, right?
- Is this how it ends for me? Or will I forever be Denise Louie, breast cancer survivor until I am no more? This was SO not the time to try weaning off my anti-anxiety medication.
- Obviously, I haven’t reach Zen master status with my meditation practice. Oh? What gives that away, you ask?
- Geez, oh Pete, Denise, why aren’t you praying?!? You should be praying real prayers, not the “baby Christian” kind. Your Dad prayed, on his knees. Every. Single. Day. You asked other people to pray for you! Praying gives everyone else peace of mind…why not you? Why do you have to be such a doubting Thomas in times like this?
- Oh Lord, I haven’t even seen any bills for this come across yet. We’re hitting the annual deductible this year, for sure! Shoot, may as well schedule all kinds of elective stuff now…but who has the wallet for all of these out of pocket expenses now that the holidays are upon us? Oh crap, I wanted to get stuff done at the house too… There goes the budget.
- Who are you kidding? You don’t do real breast exams every single month…you think you’ll notice it in the shower. You act like the guidelines don’t apply to you!
- Should I have gotten the tomo instead of the conventional mammogram? Who are you kidding, you should be glad they found what they did when they did and now you’ll know once and for all and get some peace of mind.
- Should I have gotten this done earlier in the year? Did I forget when I had my last mammogram? It’s been a year, right? How fast is this thing growing?
- Sigh, I know I should be wearing wireless bras instead of underwire but do you SEE the cantilevering I need? Big, flabby boobs drooping down to your elbows are just not attractive. Trust me on this.
- Wait, isn’t this the week several years ago my beautiful neighbor Geeta died way too young of breast cancer? Geeta, the brightest light I’ve ever met? Geeta, who inspired me to write a breast exam manifesto that I myself don’t even live up to?
- God, Denise, what the hell is wrong with you? Are you listening to yourself? GET A GRIP.
Uh huh. People tell you not to worry.
My job as an enterprise risk advisor involves me taking an event and thinking through all of the bad things that can happen including likelihood and impact so you can prevent them or at least try to minimize the impact. Uh huh. Can you see where perhaps my line of work poses an occupational hazard in real life?
10 am Friday morning, and I cannot take it anymore. I call the biopsy radiologist and talk to Jennifer in her office. She says they don’t have the pathology results yet. It’s Friday and they don’t have the results yet?! What could be the problem?
Jennifer tells me I should call the ordering doctor. I ask who that is. Let’s get real here: I’m just a ping pong ball getting bounced around. My breast doctor didn’t actually order it. She ordered a routine annual mammogram for me when I saw her in the spring, which I complied with in the fall a year after the last one when my insurance allows it. That turned into the scheduling office directing me to get a follow-up ultrasound where the attending radiologist suggested a biopsy that was performed by another radiologist, who said she would call me with results likely on Tuesday and now it’s mid-morning Friday and I still have no answers. Who here is really calling the shots? Do you all talk to one another? Do I have cancer or not? Can someone tell me what is going on? Tears are streaming down my face and my voice is trembling. I may or may not have said all of that to Jennifer on the line. I really can’t remember.
Finally, the radiologist calls me back shortly after I speak with Jennifer. It’s her lunch break and she is slammed with people to call with results and apologizes she was just simply unable to do it the evening before. This doesn’t jive with what I heard from her when I met her on biopsy day, but oh, who cares….she’s on the line with me right now.
She has good news for me. My lump is a fibroadenoma, a benign growth that does not become cancerous. She said she looked again at my films after she saw me, since I mentioned the lumps I always felt in the area where they were conducting the biopsy. (Hey, there’s an idea!) This allowed her to confirm that this is all one and the same thing but the lump never appeared on an image until I had a tomogram which located it confidently.
Now we know. And honestly, she was as gracious, professional, reassuring, knowledgeable, compassionate, and relatable as I could hope for in a healthcare professional. They all deserve the love for helping me on this journey, and I haven’t been loving.
And the thing is, I know me well enough to know I will forget what the pain of all this felt like, probably by Thanksgiving ironically enough. Kinda like how you forget what labor pains feel like after you have a kid.
But for now? Excuse me while I go find a way to celebrate life.
PS – ladies, please do your monthly breast exams. Yeah, yeah, I know I’m a complete fraud for coaching you to do it but you and I both know it’s the right thing.
So raise your left hand, then place your right hand over your heart and repeat after me:
The Breast Exam Manifesto
I, [insert name here], do solemnly swear
that I will perform my monthly breast exams
starting right here
in this position
by pressing gently with my fingers
in search of lumps and other abnormalities
then moving my hand in clockwise position
and pressing again
until I have examined
the entire surface of the left breast.
Then I promise to switch hands
and examine the right.
Ideally I will do this while laying down
for best results.
So help me God.