By the time I felt the lump in my breast, sometime in late October or early November 2006, I had experienced six months of my own personal hell. I became the person that my friends used as a yardstick against whom to measure their problems. We would have our conversations, and they would talk about their miserable jobs or problems with their partners. Then they would say, “But at least I’m not you.” Ah yes. Good thing, huh? And this was not about to change any time soon.
I do not know which day exactly I felt the lump in my breast. I was not a vigilant lump checker. Rather, I would periodically think to do a self-exam while in the shower or while dressing. I rarely did as thorough a job as the nurses would during my yearly annual exam. Actually, come to think of it, I never did that thorough a job. I would just remember sometimes to check and that is what I did one morning while getting ready for work. Sometimes I would find a lump and fiddle around with it and it would go away. I would realize it was a gland or a pimple or something else, but not something to worry about. And on that particular morning, I found a lump while I was in the shower. But when I started fiddling around with it, it did not go away. It stayed.
I got out of the shower and got dressed. The lump stayed. I asked my daughter if she could feel it and she could. I was not scared, but started to feel a little concern that perhaps I should have a doctor look at it. I would wait and see if it went away. Over the next few days the lump did not go away. I did not feel alarmed. I did not worry that this was cancer, but I finally decided to have it checked out by a doctor.
I do not have health insurance. I did not want to incur a large medical bill, especially for a lump that was likely nothing. A few years ago, I sprained my ankle and because I did not have insurance, Providence allowed me to fill out a form stating my financial situation and forgave the debt. I remembered this and called them to inquire about proactively getting coverage before seeking care.
The process was not easy. Ironically enough, it is easier to get assistance when you have more money than when you have less. I had been unemployed for nearly a year. I had drained the last of my savings paying an attorney in a court battle with Milla’s father. I had nothing left and Providence wanted to know how I could make it when I had nothing. They wanted to know how it was that I had a couple thousand dollars in the bank. I told them the truth. I had sold some furniture. I had sold Milla’s pony.
How had I gotten to a place of such desperation? I am an attorney. Everyone thinks attorneys are rich. That is so far from true, it’s laughable, especially when you factor in student loan debt. It’s obscene. Most of my friends owe near or over six figures, and I am no exception. When I left law school I worked for a firm, then I started my own practice. The first couple of months were tough, but soon after, the clients who had come in for initial consultations starting coming back to file, and new consultations were steady. I had more flexibility than I had dreamed possible, was earning a good living, and doing fairly well. Then Congress decided to change the bankruptcy laws and life as I knew it developed a deadline. No one knew exactly how things would be different after the laws changed, but we all knew business would experience a dramatic decline. I took as much business as I could in the months leading up to the law change. I took as many clients as I was capable of seeing. I worked seven days a week, often ten and eleven hours a day. Luckily since I was self-employed, I could bring Milla with me to the office. It was brutal, but I knew that the money I was earning would likely be the last I would earn for some time. I even found the time to apply for different jobs, but I got no interviews or opportunities.
Saying my life changed after the law changed would be a huge understatement. Other than child support, I had zero income. I closed my office and moved it home to save on overhead costs. I cut our expenses to the bare minimum. I did everything I could to ensure that every last dollar I had saved would stretch as far as I could stretch it. I was unemployed for nine months before I found a job as an executive assistant at an internet marketing company. Because of my law degree, they offered to pay me more in order to have me draft and review some of their contracts. The company’s books and operations were disorganized. I streamlined everything, reviewed and rewrote all of their contracts, and basically organized myself out of a job. Three months later they laid me off for lack of work.
The rest of the year did not fare much better. My daughter’s father took her and did not send her home. Custodial interference they call it. I call it feeling like my arms had been removed along with the capacity to do anything except lie in bed until three in the morning watching VH-1. It actually worked in my favor that I did not have a job because I would have been useless at it. The court case dragged on for months and cost thousands of dollars.
Through the fall I worked frantically on my house in an attempt to get it ready to sell as my savings drained away. By the time I found the lump, I was planning to put it on the market because I would only be able to pay the mortgage through the end of the year. So I set out to beg Providence to allow me a visit at reduced or no cost. I went ahead and made the appointment, figuring it was best to find out regardless whether I ended up with a huge bill.
As I waited in the examination room after the nurse had left me to change into a paper gown, I felt again to see whether the lump was there. I remembered all the times before I had felt lumps only to have them disappear within days. It was still there and I was still not worried. The nurse came in and asked me why I was there. I described the lump. I described finding it. She asked me to lie back on the bed with my right arm above my head and proceeded to examine my right breast. As she made the examination she described what she was doing. The room was passionless and clinical. November sun streamed in, enhancing the cold, blue florescent light. It was chilly and I wanted my turtleneck back.
She began to examine my left breast, moving in large circles from far outside what I considered breast tissue, working her way in. She explained that this was necessary because breast tissue is present in the areas surrounding the breast and that lumps could form there. As she moved closer to the lump, I wondered whether she would find it too. I still thought it was nothing. She moved her fingers back and forth and back and forth across the spot. “Is this it?” she asked me. I told her that it was. She asked me if it hurt. I told her it had not initially, but my prodding the spot for days had left it feeling bruised. She completed her examination and had me sit up.
“It is likely nothing,” she informed me, “But I want to get a mammogram and ultrasound to be completely sure.” I asked her then if she knew whether I had been approved for Providence assistance because I did not have insurance. She didn’t know. As she entered my information into the computer and waited for a printout, she said she thought there were places I could get a mammogram for reduced cost. She wrote some names and numbers on a piece of paper and handed me the printout ordering the tests.
Later that day I called all of the numbers she had given me. I left messages at a few of the places and waited. The ones I spoke to had no help for someone under forty. This was the story everywhere I called. Do you know how difficult it is to get someone to talk to you about getting financial assistance for a mammogram when you are under forty? In spite of having a lump and a doctor who wanted to see it, no one wanted to talk to me because I wasn’t yet old enough. It was crazy. I complained to my friends about the mammogram thing. With all the lip service paid to “finding a cure” why the hell can’t we find out if someone under forty has breast cancer in the first place? No one had an answer for me.
A few days later, the nurse practitioner called me to ask if I had scheduled a mammogram. I had to admit that I hadn’t. When she wanted to know why, I explained about not having insurance and that Providence was stalling on my application for assistance because I had too little income. I told her that all the providers I had called about free mammograms would only give me one if I was over forty.
She asked if I had called the Breast and Cervical Cancer Program. The what? No. I did not have that number and had not called. She gave me the number and the name of a specific person. She told me to call her and she was sure my age would not be an issue. I called and left a message and a short time later a kind woman called me back. She asked me some questions about my income and said it appeared I qualified for the program. She told me to fax over the order for a mammogram and ultrasound, and assuming all was in order, I could schedule a mammogram.
The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) is run by the Centers for Disease Control. It provides access to breast and cervical cancer screening services and diagnostic testing when the tests are positive for women who are not insured or cannot afford care. According to the CDC’s website, Congress passed the Breast and Cervical Cancer Mortality Act of 1990. This statute directs the CDC to offer these screening services, presumably to do just as its title suggests, prevent deaths from breast and cervical cancer. What a great idea–preventative care. Imagine that! Whether or not the program prevented my death can’t be said for certain because who knows what would have happened had I never gotten screened, but I am alive today and my cancer is “cured,” so it accomplished that much. At the very least my detection ended up being so early I was spared chemotherapy and more drastic surgery.
After gaining approval for services, I scheduled my mammogram and ultrasound. The medical center scheduled them for the same day, the ultrasound to follow the mammogram. They told me not to wear deodorant or perfume because it could mess up the mammogram. The mammography center was in the hospital in my town. The entrance was designed like so many hospitals today: photos of all the busy and important people on the board of directors, photos of past busy and important people, muted, earthy-colored carpets, printed statements letting us patients know just how much the hospital cares about us. I headed past some low-slung chairs and asked the woman at the information desk where to go. I had to fill out some paperwork in the mammography area, as well as give them the paperwork the nurse practitioner had given me ordering the tests be done. A short time later, the technician called my name.
I wondered then, as I did many time later, why is it that the medical professions require nurses, techs, and other medical helper-people to wear smocks that look like they were designed for six year olds? Are they keeping them ever prepared on the off chance a child might walk in and find comfort in the infantile patterns and colors? This theory doesn’t make much sense when the person wearing such a garment works in a place like the mammography center where the likelihood of a child patient is slim to none. Perhaps they want to subtly remind the adult patients that we are being cared for and should not only feel safe, but accept our care like good children. I don’t know. It baffles me.
In spite of the fact that her garment was more suited for a jaunt on a kindergarten playground, the technician who assisted me that day was wonderful. In fact, every mammogram technician I had throughout my entire cancer experience was wonderful. I don’t know if it’s that those kind of people are drawn to that kind of a job, or if they just love what they do, but as a group, every one of them who helped me was just so cool. They were professional and did their jobs, but all of them just seemed to enjoy having me as a patient and doing what they did.
Getting a mammogram is not an enjoyable experience. Yes, there are lots of worse things. I admit it. And complaining about mammograms seems rather silly considering how helpful they are. But seriously, why can’t they design a machine that is shaped in such a way that accommodates the rest of the body?
First they hold your breast and pull it out from your chest as far as possible, laying it on a plastic tray. At this point, you’re thinking things aren’t so bad. Then the tech steps on a little lever and that plastic tray rises up under your breast in a manner that leaves you thinking maybe they are trying to slowly tear it from your body. This requires a slightly balletic toe dance as a method of self-preservation. The tech then pushes another lever and another plastic tray lowers down and squashes your breast as flat as it will go as she asks how you’re holding up. Fine. Yes, fine. As long as I don’t tip over backwards, I may avoid an unplanned masectomy. She then decides that your arms and shoulders are in the way. Relax your shoulders. What, they aren’t relaxed? They feel relaxed to me. But apparently not because she presses them down hard with her palms.
At this point I was on my toes to keep my breast from feeling like it was being ripped off from the top, shoving my shoulders down, and feeling very nearly like I might tip over backwards. This led me to grasp wildly for a bar along the back of the machine. Oops, no! Can’t do that. Then what are the bars there for? To taunt me? Ack! I was allowed to hold the bar with one arm. That was a bit of a comfort anyway, until it became apparent that my head was in the way. Lean your head back. Lift your chin. Oh my god, I’m going to fall over backwards, I just know it, and rip off my tit in the process! I felt like someone who had fallen of the top of a very tall building and was holding on with one pinky. It was kind of funny when the tech went over to a computer screen to take the picture and told me not to breathe. Breathe? I hadn’t breathed since the top plastic flattened my breast into a neat pancake for fear of its being torn off! After repeating the process with the breast from a side angle, she left to speak to the radiologist. I sat there, topless, reading a book.
A short time later she came back and said they needed some more films, up higher, in my arm pit. We did the whole thing over again, only the squishing process was more difficult because there just isn’t much flesh there for the machine to grab. She would struggle to position me so she could film as far into my armpit as possible, go take the photo, shake her head, and begin again. Over and over she tried in vain to see whatever it was she was looking for in that armpit region. Several times she left to consult with the radiologist.
This wasn’t where the lump was at. This was something different. What were they looking for? Each time she left I would stare entranced at the moon shaded breast on the computer monitor. It really was lovely and looked exactly like a little lunar surface traced with spidery trenches and occasional clouds. Mammogrammed breasts are beautiful.
Finally, after an extended absence with the radiologist the technician returned and announced that they wanted to film another place, towards the center of my chest, in the top quadrant of my left breast towards the center. If the armpit was a struggle, getting breast tissue from my flat chicken chest was even worse. There just wasn’t anything there for the machine to grab ahold of. However, she must have managed because it only took a couple of tries before she and the radiologist were satisfied.
Time for the ultrasound. I redressed and followed the technician through the perfectly manicured halls to the room where I would undergo an ultrasound. Unlike the mammography center, this room was much more clinical. Where the mammography center was a cozy, welcoming place where everyone could sing Kumbaya together, the ultrasound room was like a large hospital room. The floors were the same industrial tile that had lined my elementary school, speckled grey things with the occasional navy blue tossed in for fun.
I was introduced to the ultrasound technician who requested I go into the attached bathroom and change into a gown, front open. Okay, I know I’m digressing yet again, but I have to wonder sometimes what makes them decide whether your gown opens to the back or to the front. There were times, like this one, where the opening to the front made sense. We’re aiming for the breast. It’s in front. Open to the front. No brainer. But other times I would be told to leave the gown open to the back, like later, during radiation. In either case, the gowns were so big I had to wrap the strings around my neck twice or hold the whole thing shut so I wouldn’t flash the planet.
I went back into the main room. A bed sat in the middle of the floor, the television monitor on which the ultrasound image would appear beside it. Another television was mounted on the wall over to the left, presumably so the person lying on the table could see the images available to the technician. I waited for a few moments and the ultrasound technician returned. She was a plain woman wearing the usual babyish outfit. She told me to lie down on the table with my arm above my head. As she instructed me how to lie on the table and moved the ultrasound wand in cold rotations over my breast, I attempted to make small talk with her. I asked her questions about her job, about the machine, about what she was looking at on the screen. After a few moments she told me the ultrasound machine was quite sensitive and that it did not work properly if I spoke. Basically, she was telling me to shut up. I lay there quietly for the next forty-five minutes while she took photographs of my breast.
Weeks later when I had another ultrasound, the technician chatted amiably during the entire procedure. I asked him whether the machine was so sensitive it would not work if I were speaking. He laughed and asked me what made me think I couldn’t talk. That first ultrasound technician was the crankiest person I encountered during my entire cancer experience, and really, she wasn’t that bad. She just didn’t want to talk to me. Throughout the entire process, all the nurses, all the staff, all the doctors were as kind and professional as they could possibly be. All of my doctors seemed to respect my education and explained things to me in great scientific detail, usually in response to my fairly detailed questions. None of them treated me paternalistically. None of them were ever rude or unkind. I have never in my life had an experience where every single person along the way was as pleasant as the medical staffs I encountered during my breast cancer diagnosis and treatment. They were truly astounding.
A couple of days after these procedures, the nurse from Providence called to inform me that I needed to schedule an appointment with a surgeon because the films showed something questionable. She said the lump I found appeared harmless, but there were other questionable things on the film that would need to be biopsied. She told me to call the Breast and Cervical Cancer lady and let her know. Then she provided me with the names of a couple of surgeons. I thanked her and hung up.
Thus began my journey into cancer. For some reason, from that point on, I knew it was cancer, yet I was never afraid. I told my counselor more than once that I knew I had it before I actually got the results. I marveled that I could remain so calm. I analyzed my feelings constantly. Was there some hidden emotion of which I was not aware? Was I stuffing how I felt? No. I was simply not afraid. It was weird. It is now a year since I began radiation and I have not once had any kind of meltdown or delayed emotional reaction. The doctors explained everything, sometimes such textbook detail my eyes glazed over. I read books and information on the internet. I had nothing to fear.
It was during the radiation process that I began feeling like a fraud. I conceived the idea to write a book about my experience to show women that cancer could be less than they fear. I spoke to so many who had were terrified when they were diagnosed, terrified through the process, then wondered later what they had been so afraid of. I have heard many more stories of women who did not go get checked because they were afraid they would have the disease, and because of the wait it was more progressed into a place that justified these fears. I began to believe that if I could show that cancer could be my experience rather than bloating, oozing, pain, and fear, maybe more people would get checked sooner and avoid the later stage diagnoses. So here I am, doing this, telling my story.
My radiation oncologist told me that every cancer for which there is a screening process, if detected early, the cancer is curable. He agreed that cases like mine should become the faces of cancer, not the scary death-filled stories. Too many people don’t get checked because they don’t want what they fear and unwittingly create a self-fulfilling prophecy. I am here to tell you, go anyway. Get checked. Make those mammogram and prostate appointments. Wear your sunscreen and check funny looking moles. If you have something and it is caught early, your experience could be less traumatic than the flu.
I have made a few posts about my breast cancer experience. If you are interested in reading them, just check my categories section or do a search.