The following post originally appeared as an essay in a small, now defunct dead-tree publication in 2003, right after I was diagnosed with Ductal Carcinoma in Situ — stage 0. Now I reproduce it somewhere every October 1 in honor of breast cancer awareness.
I now know the location of the loneliest place on earth. It is the little hallway between mammography and ultrasound. You are sitting there in a pink cape, stripped naked from the waist up save this little fashion beauty. There is something in your breast that shouldn’t be there, and rather than reschedule the ultrasound and needle biopsy for another date, you are told that you will be worked in. That alone is frightening. A million scary scenarios go through your mind, simultaneously. You twirl the patient wristband on your left wrist. You look at your patient number 705-001423-B. You have worked in this hospital, you know that 705- is the prefix for the Cancer Center, and the “B” indicates “breast.” You know too much. You have been reduced to “patient” – Ironic that…you are the least patient person you know. You sit there. And you wait.
If it is the worst-case scenario, you have a role model at least that has shown you the way. And you remember your best friend who gave up fighting. You buried her three years ago. So you sit there. And you wait.
You think of every person in your life that you may have wronged, on purpose or inadvertently. Right down to the girl in high school you made fun of because her shoes were ugly. You want to take it all back. For a moment you think that you created this thing that isn’t supposed to be there from negative energy that you put out there, that you generated and focused on others in petty disputes that suddenly don’t matter in the least. You remember that you absolutely loathed Sandra Thompson in high school, but you cannot if your life depended on it, recall why you disliked her so intensely. You remember an Airman in the early ’80’s named Roger Weir, and you couldn’t stand him. Now you can’t remember why. You recall a history professor with whom you fought tooth-and-nail, whose work you did not respect and whose conclusions you found suspect, whose students you went to bat for as a graduate assistant. Suddenly that professor doesn’t seem so heinous, even though she didn’t know the difference between a French Huguenot and a German Hessian. Still, you sit there. Still, you wait.
Finally, after what seems an eternity, but in reality has probably only been about 20 minutes, the Ultrasound Technician appears and calls your name. Silly, that. You are alone in the clock-less hallway; no one else has drawn the short straw today. Your voice cracks; it sounds small and weak, like a frightened child when you stand up and acknowledge that yes; you are indeed the patient he is looking for. He checks your wristband just to make sure, and then leads you into the darkened ultrasound room.
You lie down on the table he directs you to, and expose the breast in question. You and the technician are acquaintances – you worked in this hospital for several years, and you returned here for the diagnostic tests because it isn’t the business of any of your current co-workers that something might be happening at the cellular level that will change your entire life – at least not yet, it isn’t. It will only become their business in the event something is horribly wrong and they will need to cover shifts for you, but that is putting the cart before the horse…
He has warmed the Aqua-Sonic gel, and now he shakes the bottle and squirts a generous amount of the warm, blue goo onto your breast. You watch the screen, but steal glances at his face. You both see the same thing, and his jaw tightens. There is a blood supply, but the mass is not visible. This is not a good sign – ultrasound picks up liquid and soft tissue. This is no simple cyst, and it is on the chest wall. Your heart skips a beat, then it leaps to your throat and you feel like you are choking. You swallow hard, as many times as it takes to allay the choking feeling. Now you can feel your heart pounding in your chest. It pounds so hard that you fear it will burst through your ribcage. It pounds so hard that you are certain the technician hears it. Your mouth suddenly goes dry, and even though you are lying down, you feel weak in the knees, like you would be wobbly at best if you were standing. The technician has fallen silent, his jaw is set firmly, and the muscles twitch as he clicks the mouse and takes pictures of the area in question. He leaves the room for a moment and returns with a physician, one of the best Radiologists you have ever worked with. The doctor looks serious and does not exchange pleasantries. This sets off another round of panic, you and he have always gotten along swimmingly, and he is distant; clinician and patient.
Since the mass in question cannot be isolated under ultrasound, the needle biopsy cannot be performed today, it will have to be rescheduled and done under mammography, a procedure known as a stereotactic needle biopsy. Of course you know this, and the doctor knows you know this, but he has a rap down that he goes through in this situation, and you let him go on to the end. After he finishes, he takes your hand and squeezes it gently. “You get dressed. I am going to go take care of the scheduling of your procedure myself. I am also going to give you a prescription for some Valium so you don’t eat your cheek.” And you realize that you are nervously biting the inside of your mouth. “I’ll be right back. You go ahead and get dressed.” He pats your thigh and stands to leave. Suddenly he looks his years and you feel bad for him. You are a caregiver, and you can’t turn that off just because it looks like you might be the one in need of care for the time being.
While the doctor is out of the room, you flash on the definition of reality: Reality is something that doesn’t go away just because you don’t believe in it. You laugh out loud.
The doctor returns and sits on the little stainless steel stool. “Give me your arm Bubbe-kins” he says gently, trying to set you at ease. “I don’t want you to worry yourself sick, so I’m going to put 2 mg. of Ativan in that Saline lock before it is removed.” You thrust your arm his direction and he pushes the medicine in and you feel relaxed and at ease almost immediately. “Now you know that there is no guarantee this is bad. You keep reminding yourself of that. Here is your prescription for some Valium,” He hands you a prescription. “There are some labs I want you to have drawn – and don’t do it yourself! Let someone else collect them, process them, run them, and don’t look up the results!” He hands you another prescription. “And here is your appointment.” He hands you an appointment card. “I will see you day after tomorrow. You are the first patient, I’m coming in early to do it myself.” Then he remembers something and takes back the appointment card and begins writing on the back, giving you the home number of a young, liberal Rabbi whose wife is a survivor. You smile at him and say “Thank You.” And realize that the Ativan has lowered your inhibitions, and tears are starting to spill from your eyes. He hands you a tissue; then he is your friend again. He holds you while you sob into his chest, and you realize he smells like your father – like Tide detergent, Dial Soap, Speed Stick deodorant and Gold Bond powder. You breathe deeply and you feel safe again. He pats your back and strokes your hair, and soothes you. He doesn’t rush you and scurry off to the next patient, he lets you let it out, and stays right there, soothing, consoling, and caring.
Eventually you pull yourself together, and apologize for falling apart. He won’t hear it. He takes your hand and removes the saline lock, holds pressure for a moment, then bandages the arm before he helps you up from the table and walks out with you. As you part company, he hugs you again, and tells you not to worry, that the odds are about 50/50 that it’s nothing serious, (the odds are so bad for you because you are Ashkenazi Jewish, and
you carry the BRCA-1 genetic mutation) and if it is you are young and healthy and it’s early on. Besides, your mother is a survivor.
You leave the hospital in a fog. You don’t remember the cab ride home (could have something to do with the Ativan) and you are relieved that your husband isn’t home. You spend the rest of the day letting the machine take your calls, and just trying to process what is happening. You resign yourself to the fact that the next week will feel like a year.
And so you do the only thing you can possibly do. You sit. And you wait.
Click to expand to read a second post, We are not helpless, that first appeared as a front-page post on Fire Dog Lake two years ago today.
We Are Not Helpless
I know first hand the exact location of the loneliest place on earth.
It is the hallway between mammography and sonography, where the minutes crawl by with interminable slowness as you wait to be worked in because the technician saw something on your films and went right then to fetch the radiologist to have a look, and he has ordered a stat sonogram of the breast. I also know how it gets even scarier and lonelier when the sonography tech gets a concerned look because he can’t pick up the mass, just the blood supply to it, and his jaw muscle grows tenser and tenser as he maneuvers the wand, hoping that if he hits it just right he will see what he wants to see, instead of what he is seeing.
The slowest week of my life was spent waiting for a stereotactic needle biopsy of the tiny but highly suspicious spot on my chest wall. The normal wait for a stereotactic biopsy in that facility is less than 48 hours, but the machine was down and the part to fix it was ordered but had not arrived. My doctor sent me for bloodwork. “Let’s get your antigen levels. If nothing is elevated you can relax in two days instead of two weeks. Besides, if it isn’t the news we want it to be, we will need baseline levels anyway.”
I went to the lab and had a coworker draw some blood and another friend personally ran the two that we could do in-house. Both of those, the CA 19-9 which is a tumor marker that is not indicative of cancer type and the CA 27.29, which is indicative of breast cancer, were elevated, but not dramatically. When the CA 15-3, a test that indicates a more aggressive and advanced disease came back two days later, it was normal.
I felt like my life was a coin toss and the quarter was just hanging in the air, as if gravity were suspended.
I was scared to death – there are too many instances of the disease in my family. I cried for a day, then I was numb for one more.
Then I got defiant, or what passes for defiant when you are a 40-something urbanite who has led a pretty staid existence.
I went shopping. With a vengeance. I went to the Plaza and bought things for my granddaughter that she was far too young for, and I bought a Kate Spade handbag on credit. It was my way of saying “I will be here for a while. I will be here long enough to see Zoe play with that dollhouse and wear that diamond necklace – and to actually own that purse.”
In my case, it turned out that I was about as lucky as I could be. The cluster of cells in question was extremely tiny, less than 2mm in size, and the lymph node that was removed at the same time showed no cancer cells. The diagnosis was ductal carcinoma in situ – literally a stage 0 cancer that was confined to a single mammary gland. It was so minor that some researchers exclude cases like mine from their statistics. My treatment was so uneventful that I never threw up once or lost a single hair off my head. My experience was not at all dramatic. I went into the hospital one fine fall morning at 6:00, was in the OR by 7:15 and in recovery by 8:00 with a tiny (three stitches) incision on the side of my right breast, near the chest wall, where they removed the mass and the lymph node. I was home before lunch with a couple of prescriptions and was talking my husband down, telling him to please relax, there was nothing wrong with me. I’m a medical professional. If there was I would be the one overreacting, and after over 20 years of marriage he should know that about me. He thought about this for a minute, realized the veracity of what I said, and calmed the fuck down.
Because my healthcare comes from the government, I don’t have to fight with an insurance company that insists one mammogram a year is adequate, and if it isn’t, I am too great a risk to insure. Because my doctor is free to treat and test me as he sees fit with no insurance company employee standing between him and his patient, he took one look at my family history and ordered an annual bilateral MRI of the breasts and a mammogram every six months. A tiny spot that had not been there six months before was picked up almost as soon as the first onco cell underwent mitosis, and long before it had a chance to permeated my chest wall and get to bone, or spread to my lymph system. Because my doctor, who works for a salary rather than fee-for-service, is allowed to make decisions that are in my best interest and not that of an insurance company, I had a very non-eventful experience with a very traumatic disease. I missed a grand total of two days of work and my treatment consisted of taking one pill a day for 36 months. I still get mammograms and antigen levels every six months, and will for the rest of my life. As of today I remain cancer free.
Because of my job – I was a supervisor working in a clinical lab that received a few million dollars in cancer research grants every year – I was aware of ongoing research into the effects of lifestyle on both prevention and recurrence. I knew that the preliminary results were encouraging because I had crunched some of the numbers myself. Besides that, who has ever seen their health deteriorate because they quit smoking, stopped drinking, started exercising and eating better and reduced their stress?
Now the data has been analyzed and the peer-reviewed studies on lifestyle changes and breast cancer are making their way into professional journals and the results are encouraging, especially for survivors who make lifestyle changes in an effort to prevent a recurrence of a second primary invasive contralateral breast cancer.
Breast cancer survivors might be able to reduce their risk for contralateral breast cancer by making lifestyle modifications. A new study published online September 8 in the Journal of Clinical Oncology has found that obesity, alcohol use, and smoking all significantly increase the risk for second primary invasive contralateral breast cancer among breast cancer survivors.
Researchers from the Fred Hutchinson Cancer Research Center in Seattle, Washington, found that obese women had a 50% increased risk for contralateral breast cancer, and those who consumed 7 or more alcoholic drinks per week had a 90% increased risk. Survivors who currently smoked had a 120% increased risk of developing a second breast cancer.
The risk was particularly high in women who were current smokers and who consumed at least 1 alcoholic beverage a day. The authors found that this subgroup of women had a 7.2-fold (95% confidence interval [CI], 1.9 – 26.5) elevated risk for contralateral breast cancer.
I have always lived a pretty healthy lifestyle. I don’t smoke, and I rarely drink (Netroots Nation doesn’t count!) I have always
gotten adequate exercise and being able to stand to lose about twenty pounds that I had gained gradually as I went through a series of five knee surgeries in the four previous years didn’t exactly qualify me as obese. In other words, outside of reducing stress, there just wasn’t a lot for me to change…in my own life. But I could certainly make myself insufferable to friends, relatives, acquaintances and people stuck in an elevator or checkout line with me who dropped their guard and made eye contact or let their eyes linger on a pink ribbon for more than two seconds.
My mantra has always been “we aren’t helpless” because there are things we can do to be proactive and reduce our risk of both initial occurrence and secondary recurrence by making some lifestyle changes. If you smoke, stop. If you drink more than one alcoholic beverage per day, cut way back on that, too. If you aren’t getting enough exercise, make an honest effort to increase your activity levels. Eat a healthy diet that is low in fat, high in fiber and rich in fruits and vegetables – and if you do the last two things, weight issues tend to resolve themselves.
October is breast cancer awareness month. Make a vow to educate yourself and practice good breast health. Get regular screening mammograms, and do regular self exams. (If you don’t have a regular menstrual cycle to remind you to do your self exam, pick another monthly event to serve as your reminder. My usual suggestion to women who don’t have a period is to do it the day the phone bill comes in the mail.) Adjust your lifestyle to lower your risks. If you have a friend or a loved one who gets a diagnosis, be supportive and loving and positive and encouraging, because I can tell you this as a healthcare practitioner for over two decades: people with good, positive social networks always have the best outcomes. And the fact that we now have clinical proof that we aren’t helpless, well, there is something to be positive about – and that is as good a place to start as any.
This post originally appeared at Fire Dog Lake