I kept staring at my left breast with disbelief. No way could there be anything wrong with it. I kept rationalizing what I was observing. Telling myself, you are very top heavy. Breasts are not going to look symmetrical. No, it's not thicker than the other. That's some optical illusion. Besides, I reasoned, your best friend and your mother died of cancer within six months of each other, as if that were some magical Get Out of Jail Free card.
When I went in for a mammogram, the technician wasn't even certain my left breast would fit the machine. She left the room to consult with her supervisor. She returned and she immediately apologized for having to hurt me. She didn't.
The ultrasound technician returned with the radiologist. They were perplexed by what they saw. Fluid. Looked like a cyst. I felt smug. Not cancer. A cyst. Ha! I was sure the aspirated cyst would show nothing but pus. All the worrywarts including my primary care physician could go jump. The nurse said 75% of these cysts turned up benign. That meant 25% weren't benign. I began to wonder, what if this cyst were cancerous. Nah. I was going to be one of the 75%.
The doctor remarked to the ultrasound technician that the fluid did not look right. I tried to ask her what she meant, but maybe she didn't hear me. Why didn't it look more like pus, I wondered.
"How am I supposed to feel," I shouted into my cellphone at my primary care physician as I navigated traffic on the way to a second biopsy. I had spent that weekend in a rage. Atypical cells. Happy Mother's Day to me. Bitter did not begin to cover it.
The doctor spoke to me as she did the second biopsy. I asked her where she was from. We chatted amiably as she injected needles into me to take more samples. Could have been a conversation over sandwiches at a nearby restaurant.
The news or, rather, verdict, came back quickly. Grade three invasive ductal carcinoma. Still sounds like an old fashioned dance to me. Something from the 40s. Men and women dancing together on a ballroom floor while a woman singer backed by a seven piece orchestra cheerily sings "Doing the carcinoma. Dah, dah, dah, dah, dah, dah, dah, dah."
Took a while for me to realize that grade three was serious in and of itself, even after I started telling people about it. Then I looked it up. That's when I understood that, at the very least, the cancer had spread throughout my left breast.
"I won't hold it against you," I told the surgeon, when I saw he was wearing a White Sox pin. My mock disdain was as much about him being Southside Irish as it was about him being a Sox fan. Afterall, I was married to Northside Irish. I had to display some loyalty.
He good naturedly oversaw the resident who did the skin punch biopsy and then sewed up the small hole she had left in my breast. Made me feel good to know I was at a teaching hospital, and I liked the surgeon's easy manner with his student. `As I drove away from the hospital, I thought, if I were to need surgery, then I would be in good hands.
"You have inflammatory breast cancer," the oncologist told me. She went on to explain to me that this form of breast cancer was very aggressive. There is no Stage One. There is no Stage Two. My breast cancer starts at Stage Three. She told me that I'd either have six rounds of chemo once every three weeks or chemo once every two weeks depending on what the MRI, bone scan, and CT scan showed.
I left her office feeling numb. I was almost certain scans would show that the cancer had metastasized. Stage four, she had explained, was treatable like a chronic illness. Stage three, however, was curable. Made me wonder if this was something I'd have to live with for the rest of my life, or if I'd be able to be declared cancer free after five years. Five years was going to be long enough to wait and wonder. I didn't want to think about worse.
"Your breasts won't fit," the MRI technician explained to me. I didn't need her to tell me that. I could see it for myself. She went to call the oncologist to see what she wanted me to do. I got dressed and sat in the waiting area. I was 44I to begin with, and cancer breast, as I had dubbed it, had gotten that much larger. On one hand I was relieved because this was a closed machine, and I am claustrophobic. On the other hand it felt like insult to injury. After a while the technician told me to just go home.
I sat in my car and cried. The purpose of the MRI was to see if the cancer had spread to my other breast. The technician was a nice woman, but I felt humiliated all the same. Then a pleasantly dark thought entered my mind. I smiled. "Break out the rusty saw." Gonna have a mastectomy anyway so why not? I laughed and drove home.
I paced about on our front porch while trying to digest what the oncologist was telling me. She told me that aside from a tiny spot in the middle of my spine and a tiny spot on my right lung, she considered me still Stage Three. I could hardly believe it. I felt like I was going to collapse on the ground out of relief and gratitude. Main thing I knew was that I was gonna live.
I went grocery shopping. I ate free samples. I felt like I was on top of the world. Who knew one would feel grateful having Stage Three cancer? But I did. Not just treatable but survivable. I had an aggressive form of breast cancer that began at Stage Three and thankfully ended at Stage Three. While I wished I didn't have cancer in the first place, I was grateful all the same. I knew it was only a matter of time before my cancer would make like Snagglepuss and exit. Neither to the right nor to the left but... Exit. Stage Three.
Cancer is an unpretty picture
Painted by an indifferent artist
Placing me in an uneven frame
Badly wanting to see me upended
Haughtily mocking all decorum
Bony finger jabs me in the breastbone
A tirade through thin lips cuts me to the quick.
I square my shoulders and face my enemy.
Hey, punk, you want a piece of me? Do you?
I have fought more formidable foes than you.
I have repeatedly risen from ashes.
You think I will not rise yet again?
I have rolled in larger dung heaps than you.
I will arise and glow and you will perish.
Coward that it is, cancer scurries away.
"And then there's Adult Protective Services," the school nurse said. "Crazy, huh?"
Crazy, huh. I restrained myself from asking her, "Do you realize what you are saying?" I don't think that, unlike previous remarks, this was calculated. I think she was acknowledging that she was just one overzealous mandated reporter in a system that rewards such behavior at the expense of parents like me. She also mentioned that other school nurses would be worse than her. If they are, then those of us with special needs kids are in deep trouble.
Parenting is never easy. There's always things that come up that one would never expect in a million years. You love your children, but sometimes you want to disavow any knowledge of them. "That kid? Never saw her before."
Parenting a special needs kid, however, is, to borrow a pro feminist slogan, "dancing backwards and in heels.". A parent with a special needs kid is being scrutinized in a way that a parent of a "normal" child can neither begin to imagine nor be willing to put up with.
From the moment Kid O entered the world, I've been subjected to the worst kind of scrutiny. Because she was a preemie who weighed only 3 lbs, 10 oz, her birth was reported to the Department of Public Health. I was terrified when a nurse showed up. She was nice about it, but I understood the implication. Underweight premature babies were assumed to be given birth to by mothers who were poor, ignorant, and who hadn't sought out prenatal care, and, in a word: neglectful.
One day, as I was getting ready to take Kid O on the train to see my folks, two public health nurses, a man and a woman, practically barged through my door. The man would not take "no" for an answer. I uttered utter a mild protest, stating that the regular public health nurse had told me that she would be the only one coming around. He told me that that nurse was on vacation. Even though I knew I had rights, I was afraid to say "no." Much to my shame and horror, he insisted I hand over Kid O for a surprise inspection. I watched, speechless, as he took her over to her bassinet and undid her diaper. It was only after that that I had the wherewithal to call the Department of Public Health and canceled subsequent visits.
Now, granted, it's damned uncomfortable listening to someone whose only means of communicating distress is to go all primal. Imagine how it impacts the parents of such a being. There are times when I still get so rattled that I feel like a shooting gallery duck.
Babies can be fussy. They are wet. They cry. They are tired. They cry. They are hungry. They cry. Ordinarily if you put a baby in their carseat, they will fall asleep. Same thing if you put them in their stroller.
Kid O had such a disorganized nervous system that these tried and true methods did just the opposite. Put her in her carseat and she would cry hysterically to the point of throwing up all over herself. That didn't stop until she was around four.
People assume that if someone requires help with toileting or feeding or dressing that they are physically weak. Kid O is not without her ways of resisting something she does not want. Just because she doesn't have a lot of muscle mass, doesn't mean that being kicked by her wouldn't hurt. The girl packs a mean mule kick.
Some mornings it takes two of us to get her into her wheelchair. One to bend her legs and keep her from extending her hips, and the other to strap her in. There have been times when I have had to deal with Kid O turning herself into a human board. Eventually I would prevail, but not without an average of twenty minutes of cajoling and heavy lifting, which would leave me gasping for air.
I don't begrudge women their perfect children. I just always wanted the same thing. And, barring that, at least not to be thought of as if I were some criminal. Unfortunately, my circumstances are not that unusual. I have read of instances of special needs children removed from their parents simply because these people are flawed human beings. For some reason people think they can raise Kid O better than my husband and I can. I had one woman start a whisper campaign against us. Why? Because on the morning she came over, we were feeding our daughters *gasp* toast and jelly and not a full breakfast. And so it goes.
People have no idea how difficult it can be to guide a special needs child to adulthood. They have no idea how incredibly stressful it can be. They contact DCFS without considering how unnecessary and how hurtful it can be.
The last time DCFS was called out, we hired an attorney to join us at a meeting at Kid O's school. My husband made a point of mentioning my high blood pressure. The teaching staff received his meta message loud and clear, "If anything happens to my wife..." I was grateful for his protectiveness. I could see Kid O's teaching team shift from being on the offense to realizing what harm they could cause. Do people not consider how devastated Kid O would be if she were removed from the two people who love her and understand her better than anyone in the world?
When I am not being considered a criminal, I am being placed on a pedestal. When I fall from that pedestal, people become incredibly disillusioned with me. Neither place is comfortable. I have never asked for people to worship me. Respect and compassion would go a long way to acknowledging me and other parents of special needs children. We are neither sinners nor saints. We are just people who happen to face enormous challenges every day. And, hopefully, with a tremendous amount of grace.